I’m finding it rather amazing that I can remember so much detail doing it in this short burst manner. Putting our history down in chronological order revives many memories. Yet, there is much that I’d left out. Forgotten until writing more, or going back and reading.
One of the more important details I’ve left off was S’s ears.
I wrote about his infections but I didn’t write about the fall out. Shortly after his first birthday we saw the ENT for the first time. He said that the problem was severe enough for tubes. Tubes was far more common then than now, but I think even now, with today’s guidelines, he’d still have gotten the tubes.
He was scheduled for surgery shortly after the new year. January 1991 was the first time I had to arrive at 6 am with a baby who had not been allowed to eat since midnight. How do you explain to your 1 year old that they cannot have anything to eat or drink when they wake up at 3 am, or when you get them up at 5 AM. How do you tell him as you change his diaper and dress him …that not only can he not have breakfast, but he can’t even have a sip of water?
How do you look into your child’s eyes and see the pain, the confusion and think of yourself as a good mother? How do you carry through? The instinct to give him the milk and cheerio’s and call the hospital and cancel was great. But, I didn’t. Memories of holidays in the ER, middle of the night screams from pain in his ears drove me past the pain of betrayal I saw in his eyes.
I dressed him in comfy clothes. I bundled him up and D and I, in the freezing cold, drove our son to where they would give him medication that would make him, not only sleep, but could make him feel sick. To allow them to take a scalpel to his precious ear drums and place a foreign body in those ears … in hopes of saving future problems.
They called us back and he was quite angry by then. The nurses were kind, caring and gentle. They gave him the pre surgery cocktail. His little head started to bobble and my heart started to break. There is something so very wrong about intentionally causing pain, discomfort for your child, even when you intellectually know it’s for the good.
D and I went out to the waiting room after they took him from us. We talked, we paced, we stared blankly at the TV in the waiting room. There was another, more private room near by. The receptionist, seeing me stare so blankly came up to us and tell us that we were more than welcome to use that room. There were many other families there, but we were the only ones with a baby. We felt alone, isolated and scared.
After what seemed like forever, but was in all likelihood, a short time, Dr. C came out to get us. He told us that S had done just fine. The tubes were well placed. We were given a script for antibiotics to prevent another infection and told to give him ibuprofen and Tylenol for discomfort.
We were taken back to the recovery room to sit with him till he could go. The anesthesia made him terribly sick. He was throwing up and was so angry. He wanted nothing to do with me. The recovery room nurses called over to the inpatient surgery to let my sister in law know he was out. She came over and S went to her instead of to D or me. My heart broke. I did not feel betrayed by him, but I felt that my betrayal of him had damaged him some how.
After he started to wake up, was less ill, he crawled from P’s arms into mine, where he stayed (except in the car seat) for the next 12 hours.
He woke up the next morning and I carried him into the living room. He stood up and fell down. He crawled to the TV, pulled himself up and fell down immediately. It seemed he had no control over his little legs. He let out a blood curdling scream of anger and frustration.
I called Dr. M who said to bring him in. Normally, post surgical problems need to go to the surgeon, but he was so concerned that his symptoms were too much ‘like mom’s’ (mine). The absolute failure of muscles to support him.
We waited to see the doctor a very short time. He came in, checked his strength, muscle tone, reflexes and sighed a DEEP sigh of relief. He wrote in his chart that the pre medications should probably not be used on him. He either metabolized them too fast or too slow and that is why he’d been so sick, that was why he could not walk. He was still suffering the effects of anesthesia. The doctor handed him back to me, told me to push fluids and to let him know the next day how he was.
The next day, S woke up and climbed out of his crib, came into our room to wake us up. Not something we expected after the day before much less at 14 months old!
We called the doctor to tell him. The relief in his voice was almost tangible.
We thought the battle with the ears would over. It was not to be. A short 7 weeks after surgery he had another infection. This began the familiar routine of infection/antibiotics/infection/antibiotics. The difference was, they were found in the doctor’s office during office hours, not the middle of the night with sky high fevers.
When he turned 2 the ENT said that he wanted him on antibiotics for 2 months, then we’d see where we were. He went off the antibiotics shortly after Christmas. B had just been born. January 2, he got another infection and the ENT set him up for replacement tubes.
The second surgery went smoother than the first. They’d not used the pre op meds, which meant he was more alert, but at 2, his language skills were better and he understood what ‘wait’ meant. He also knew what ‘doctor’ meant. While he wasn’t happy, he did not look at me like I’d betrayed him.
We took him back to the pre op, and because they didn’t give him the medication, they allowed me to walk him back to the operating room. This, is not something I would recommend. Laying my son on the table was worse than the letting someone take him. The reality of the operation, the scalpel hit me harder.
In April, they learned he was having a bad reaction to the materials of the tubes and one of them had turned as a result. They replaced them. While this did not solve his ear infections, it did help A LOT.
Children were supposed to have one set of tubes. He’d had 3. We had no idea that we’d repeat this when he was 10 years old.
Sunday, August 22, 2010
Saturday, August 21, 2010
Lows and Highest Highs
December 8, 1992, a Friday. We took B to OT and then on into PT. The therapist told me that he was very pleased with B’s progress. When he’d started working with him he couldn’t even roll over yet. And here we were just a few short months later and he’d made incredible progress. He told me that normal walking takes place between 11 and 15 months. B was only about 6 months from walking. Which would only be a 3 month delay. It didn’t sound good to me, till he reiterated how far behind he’d started. OH, OK !
I took him from the OT to a new doctor. A Pediatric Endocrinologist. They’d referred him to this doctor because he was still not growing. He was born at 9 ½ pounds and here he was at a year, he should have been 27 pounds, but he was only 18. Not even double his birth weight!
The doctor examined him, and in pure B style … he threw up all over the doctor.
He asked about the eczema on his cheeks and what we were doing for it. I told him. His jaw gapped open. He said “stop. NOW!” He told me that steroid’s can cause growth issues. I knew that, because of the times we’d had to use it for lung issues. It never occurred to me that it could be the same with a skin cream!
We stopped treating the eczema and within weeks his growth started to happen.
We started to plan his first birthday party. The 15th we’d set aside the time to focus on the plans. We woke up to B screaming. Raging fever .. coughing, you could hear the congestion when he tried to breathe. He wound up in the hospital, with pneumonia, again.
His birthday party got put on hold. But he spent his first birthday in the hospital. This brought painful memories for my husband who had spent many of his childhood birthday’s in the hospital. D had several nightmares that week, and I was worn to a frazzle.
My Dad arrived for a Christmas visit on the 21st. The day we brought B home from the hospital. We talked a lot about B’s progress in PT and his health, my health, D’s health. But we had a good Christmas. Dad had gotten S a cherrio’s game for Christmas and he was thrilled with it.
B got a walker that had been recommended by the PT …one that could pull himself up to a stand and use to push around. Every gift he had was related to his development. I was torn between knowing that to him, they were toys, to me, they were necessity.
Thursday night, late, D & S were sleeping and my Dad and I were watching Yentl on PBS. B was playing on the carpet between us. Suddenly, he turned to me, pulled himself up to a stand, toggled a bit as he turned toward my Dad and took 3 steps! Dad caught it on film.
S had taken his first steps on Father’s Day when we were in California visiting my Dad for my brothers wedding. Now he was here for B’s first steps. For a grandfather who was half a country away, it was quite remarkable.
The next day we had to take B to OT and PT. We walked in, and I had no intention of telling the therapist what had happened the night before. B had repeated walking, so I knew it wasn’t a fluke. I had planned on just letting him surprise the PT during his session. We walked in and headed to the OT gym first. His PT was coming toward us. He took one look at my face and squealed like a 13 year old girl. “You’ve got to be kidding me! He took his first steps didn’t he?”
I’m guessing playing poker wouldn’t be a wise idea for me.
At 9 months, he could not turn over, at 1 year 1 week and 2 days, he was taking his first steps. The first of many miracles.
I took him from the OT to a new doctor. A Pediatric Endocrinologist. They’d referred him to this doctor because he was still not growing. He was born at 9 ½ pounds and here he was at a year, he should have been 27 pounds, but he was only 18. Not even double his birth weight!
The doctor examined him, and in pure B style … he threw up all over the doctor.
He asked about the eczema on his cheeks and what we were doing for it. I told him. His jaw gapped open. He said “stop. NOW!” He told me that steroid’s can cause growth issues. I knew that, because of the times we’d had to use it for lung issues. It never occurred to me that it could be the same with a skin cream!
We stopped treating the eczema and within weeks his growth started to happen.
We started to plan his first birthday party. The 15th we’d set aside the time to focus on the plans. We woke up to B screaming. Raging fever .. coughing, you could hear the congestion when he tried to breathe. He wound up in the hospital, with pneumonia, again.
His birthday party got put on hold. But he spent his first birthday in the hospital. This brought painful memories for my husband who had spent many of his childhood birthday’s in the hospital. D had several nightmares that week, and I was worn to a frazzle.
My Dad arrived for a Christmas visit on the 21st. The day we brought B home from the hospital. We talked a lot about B’s progress in PT and his health, my health, D’s health. But we had a good Christmas. Dad had gotten S a cherrio’s game for Christmas and he was thrilled with it.
B got a walker that had been recommended by the PT …one that could pull himself up to a stand and use to push around. Every gift he had was related to his development. I was torn between knowing that to him, they were toys, to me, they were necessity.
Thursday night, late, D & S were sleeping and my Dad and I were watching Yentl on PBS. B was playing on the carpet between us. Suddenly, he turned to me, pulled himself up to a stand, toggled a bit as he turned toward my Dad and took 3 steps! Dad caught it on film.
S had taken his first steps on Father’s Day when we were in California visiting my Dad for my brothers wedding. Now he was here for B’s first steps. For a grandfather who was half a country away, it was quite remarkable.
The next day we had to take B to OT and PT. We walked in, and I had no intention of telling the therapist what had happened the night before. B had repeated walking, so I knew it wasn’t a fluke. I had planned on just letting him surprise the PT during his session. We walked in and headed to the OT gym first. His PT was coming toward us. He took one look at my face and squealed like a 13 year old girl. “You’ve got to be kidding me! He took his first steps didn’t he?”
I’m guessing playing poker wouldn’t be a wise idea for me.
At 9 months, he could not turn over, at 1 year 1 week and 2 days, he was taking his first steps. The first of many miracles.
Friday, August 20, 2010
New Era, Same story
A new regime began. Physical Therapy 2 times a week, Occupational Therapy 2 times a week and Speech 3 times a week. Most of the appointments would come on Monday’s Wednesday’s and Friday’s and we had them back to back. By the time we finished 3 hour long appointments my body was done for the day.
My obsession with loosing weight was increasing. I found many ways to avoid eating (always had) and made sure I took the diuretics and laxatives when I couldn’t get rid of what I’d eaten.
All this time, I’m taking my son to this therapy and that therapy, this specialist and that specialist … and I was running to and from the PCP and the neuro, the ophthalmologist and a GI doctor.
In early October, both boys got pneumonia again. With a lot of work, care and forcing fluids we kept them out of the hospital. But they stayed sick for the majority of the month of October. They’d finish one round of antibiotics and would have to start another.
October 8 my husband was scheduled for an EDG (the camera into the stomach). They took him back and I sat in the waiting room. The children were at my mothers. When it was over, I expected the GI doctor to come out and tell me how things went. Instead a nurse came out and said “I think you should come back here , now”
D was not waking up properly and his heart was racing and not in a good rhythm. They were preparing him to transfer to the ER. We went to the ER where doctors familiar with our family were working. They jumped right onto what was going on, ordering x-ray’s, blood test, blood gasses and cardiac testing. A cardiologist came to talk to me. Don was being admitted for Atrial Fibulation. At this point in time, we had no reason to connect it to the EDG, it was coincidence as far as anyone knew.
They gave him meds and they hoped his heart were convert to normal rhythm. After a few days, it still had not converted. They told us that if it wasn’t normal rhythm by morning, they’d shock his heart. I wasn’t there when the doctor explained the procedure, and D did not give me an explanation. I was too terrified to ask questions. I took a ‘wait and see’ attitude. And Prayed.
I went in at 6 am the next morning, the time they said they’d be taking him for the shocking treatment. I got there a few minutes before the cardiologist and when he came in he had a grin on his face. D’s heart had returned to a normal rhythm at almost exactly 4 AM. He joked that his heart was scared of the procedure and had shocked itself back into rhythm.
He was discharged after 5 days with more medications. It seemed that almost monthly, a new medication was added to someone in the family.
The boys were finally starting to feel better, but still coughy and cranky. This round of antibiotics seemed to be working better.
D’s mom and step dad came up to see him ….after he was discharged from the hospital. His step father had been a very abusive man, and I was extremely protective of my kids when he was around. That day, he kept teasing S to make him cry. It infuriated me. My mother in law kept talking about how cranky they were and couldn’t I do something.
“Well, GEE … they’ve had pneumonia and their father has been in the hospital. S’s 3rd birthday would be the next day and he couldn’t have a party because he was too sick. Now, we’re at his aunts house with 2 older kids and 6 adults in a small trailer. No, I don’t think I can do anything to make them less cranky!”
That’s what I wanted to say. What I *DID* say was “I’m so sorry, they’ve just been sick and they’re scared for their dad. It’s all a bit much to take in.”
D and my sis in laws boyfriend went to the store to get some soda. While he was gone my Father in law pushed (on purpose) S and when S didn’t fall (or cry) he pushed him harder. S’s head slammed into the kitchen table and he let out a scream. My Father in law started to laugh and said “what a wimp”. I lost it, I screamed at him like I’ve never screamed at any one in my adult life …before or since.
My mother in law burst into tears and I asked her what she expected. My Father in law had stormed outside and my Mother in law started to cry and beg me to apologize to him. As this was going on, D and J came back and my MIL met them on the porch telling them what a scene I caused. I was getting the boys things together because as soon as D came back with the car we were leaving! D stood up not only for the boys, but for me as well.
They argued, which infuriated me. He’d just gotten out of the hospital with a new heart condition and all my MIL could do was yell at him that I was controlling, complaining and I’d caused her severe problems with her husband. As D got the boys loaded in the car, I was getting the last of our stuff together. My SIL had gone out to make sure the boys were ok.
My MIL came back in the house, stuck her finger in my face and said “you may have everyone else fooled, but I know how you really are. You WILL NOT come between me and my son. I’ll see to that!”
I left and she followed me back out onto the porch. She was crying and saying that we could work it out. Her personality had done a 180 from what had just transpired.
A week later we got a letter of apology from her that essentially said “I’m sorry, but it’s all your fault”. (meaning, if I’d kept my mouth shut, and took S into another room so N didn’t hear him crying, nothing would have transpired and all would still be peaceful). D wrote her back and said that while she was welcome and as his mother, would always be welcome, N was to never come to our house again, nor be anywhere near the children. We would not be back to visit them until he’d not only apologized, but REPENTED and changed his attitude. Almost 18 years later, that has still not happened.
Halloween came and the boys were feeling almost better. My SIL and I took the boys trick or treating. I started to have trouble breathing and she grabbed the boys ran back to the car, picked me up and took me to the ER then called my husband to come down and my mom to come get the kids.
After several hours in the ER, where the ER doctor was rather rude to me. At one point she said “this can’t be myasthenic crisis, you’re not anxious enough. Every myasthenic I’ve seen in crisis is panicky” Well, I had the tendency to panic, but I’d noticed early in the process how much harder it was to breathe. It was consciously staying calm. Then when my husband said that if it’s not myasthenic crisis, what was going on, she said “Well, she’s just hyperventilating, she’ll be fine.”
We knew then that something was wrong …, hyperventilating …but too calm?
She was waiting on a call from my neuro. When the call came she came back in and said that the doctor had said that I could be admitted for observation over night if I felt safer, or I could go home. It was up to me. Not being someone fond of the hospital, I said I wanted to go home. She said “OK, but first I need you to sign a form”
D asked what the form was and she said that it was a form about leaving against medical advice. Both of us said “no!” in no way shape or form were we going to sign that!
She became very angry with us for not signing and said that she’d do the admission, but the neurologist would probably be very mad.
I was taken up to the room where the nurses were much nicer, they were concerned and kept asking if they’d said anything to me about putting me on oxygen. I said no.
The neurologist came in early the next morning and asked me why my oxygen was off. I said I had no idea, as far as I know , none had been ordered.
He sat down next to me and explained that the Imuran and Mestinon were not doing enough to control so we would be starting Prednisone. Some myasthenics have an initial negative reaction, so I’d be in the hospital for at least a week while they started the Prednisone.
He was also going to order some breathing treatments since my sons had been sick with pneumonia. He didn’t want my body trying to fight off a pneumonia while starting on 100 mgs of prednisone.
I was very confused. I told him what had gone on in the ER and he let me know, in no uncertain terms, that HIS orders had been for admission, start oxygen and she was to let me know to plan on being there a week!
We talked a bit longer and then as he got up to leave it hit me. This is Sunday, the first of November! The Presidential election was on Tuesday! What would I do. He said he was sorry but I’d have to be here.
He walked back in and said “Wait, who are you voting for?” When I told him, he said “Ahh, great, I’ll see what I can do about getting you an absentee ballot. For the record, he was unable to do so, we lost the election and I’ve never let him live it down that he kept me from voting.
This one conversation started one of many, pleasant and interesting political discussions. (ones that would drive his nurse to distraction over the years to come!)
I got out of the hospital the following Monday … only to turn around to take Benjamin to the doctor on Wednesday. He was still fighting the pneumonia …or it was back, we were never quite sure. Either way, this time, the doctor felt he needed admission. He stayed from Wednesday to Sunday.
I was starting to wonder if our world would ever look any different than the road between our house and the hospital, the inside of a doctor’s office or the 4 walls of a hospital room.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My obsession with loosing weight was increasing. I found many ways to avoid eating (always had) and made sure I took the diuretics and laxatives when I couldn’t get rid of what I’d eaten.
All this time, I’m taking my son to this therapy and that therapy, this specialist and that specialist … and I was running to and from the PCP and the neuro, the ophthalmologist and a GI doctor.
In early October, both boys got pneumonia again. With a lot of work, care and forcing fluids we kept them out of the hospital. But they stayed sick for the majority of the month of October. They’d finish one round of antibiotics and would have to start another.
October 8 my husband was scheduled for an EDG (the camera into the stomach). They took him back and I sat in the waiting room. The children were at my mothers. When it was over, I expected the GI doctor to come out and tell me how things went. Instead a nurse came out and said “I think you should come back here , now”
D was not waking up properly and his heart was racing and not in a good rhythm. They were preparing him to transfer to the ER. We went to the ER where doctors familiar with our family were working. They jumped right onto what was going on, ordering x-ray’s, blood test, blood gasses and cardiac testing. A cardiologist came to talk to me. Don was being admitted for Atrial Fibulation. At this point in time, we had no reason to connect it to the EDG, it was coincidence as far as anyone knew.
They gave him meds and they hoped his heart were convert to normal rhythm. After a few days, it still had not converted. They told us that if it wasn’t normal rhythm by morning, they’d shock his heart. I wasn’t there when the doctor explained the procedure, and D did not give me an explanation. I was too terrified to ask questions. I took a ‘wait and see’ attitude. And Prayed.
I went in at 6 am the next morning, the time they said they’d be taking him for the shocking treatment. I got there a few minutes before the cardiologist and when he came in he had a grin on his face. D’s heart had returned to a normal rhythm at almost exactly 4 AM. He joked that his heart was scared of the procedure and had shocked itself back into rhythm.
He was discharged after 5 days with more medications. It seemed that almost monthly, a new medication was added to someone in the family.
The boys were finally starting to feel better, but still coughy and cranky. This round of antibiotics seemed to be working better.
D’s mom and step dad came up to see him ….after he was discharged from the hospital. His step father had been a very abusive man, and I was extremely protective of my kids when he was around. That day, he kept teasing S to make him cry. It infuriated me. My mother in law kept talking about how cranky they were and couldn’t I do something.
“Well, GEE … they’ve had pneumonia and their father has been in the hospital. S’s 3rd birthday would be the next day and he couldn’t have a party because he was too sick. Now, we’re at his aunts house with 2 older kids and 6 adults in a small trailer. No, I don’t think I can do anything to make them less cranky!”
That’s what I wanted to say. What I *DID* say was “I’m so sorry, they’ve just been sick and they’re scared for their dad. It’s all a bit much to take in.”
D and my sis in laws boyfriend went to the store to get some soda. While he was gone my Father in law pushed (on purpose) S and when S didn’t fall (or cry) he pushed him harder. S’s head slammed into the kitchen table and he let out a scream. My Father in law started to laugh and said “what a wimp”. I lost it, I screamed at him like I’ve never screamed at any one in my adult life …before or since.
My mother in law burst into tears and I asked her what she expected. My Father in law had stormed outside and my Mother in law started to cry and beg me to apologize to him. As this was going on, D and J came back and my MIL met them on the porch telling them what a scene I caused. I was getting the boys things together because as soon as D came back with the car we were leaving! D stood up not only for the boys, but for me as well.
They argued, which infuriated me. He’d just gotten out of the hospital with a new heart condition and all my MIL could do was yell at him that I was controlling, complaining and I’d caused her severe problems with her husband. As D got the boys loaded in the car, I was getting the last of our stuff together. My SIL had gone out to make sure the boys were ok.
My MIL came back in the house, stuck her finger in my face and said “you may have everyone else fooled, but I know how you really are. You WILL NOT come between me and my son. I’ll see to that!”
I left and she followed me back out onto the porch. She was crying and saying that we could work it out. Her personality had done a 180 from what had just transpired.
A week later we got a letter of apology from her that essentially said “I’m sorry, but it’s all your fault”. (meaning, if I’d kept my mouth shut, and took S into another room so N didn’t hear him crying, nothing would have transpired and all would still be peaceful). D wrote her back and said that while she was welcome and as his mother, would always be welcome, N was to never come to our house again, nor be anywhere near the children. We would not be back to visit them until he’d not only apologized, but REPENTED and changed his attitude. Almost 18 years later, that has still not happened.
Halloween came and the boys were feeling almost better. My SIL and I took the boys trick or treating. I started to have trouble breathing and she grabbed the boys ran back to the car, picked me up and took me to the ER then called my husband to come down and my mom to come get the kids.
After several hours in the ER, where the ER doctor was rather rude to me. At one point she said “this can’t be myasthenic crisis, you’re not anxious enough. Every myasthenic I’ve seen in crisis is panicky” Well, I had the tendency to panic, but I’d noticed early in the process how much harder it was to breathe. It was consciously staying calm. Then when my husband said that if it’s not myasthenic crisis, what was going on, she said “Well, she’s just hyperventilating, she’ll be fine.”
We knew then that something was wrong …, hyperventilating …but too calm?
She was waiting on a call from my neuro. When the call came she came back in and said that the doctor had said that I could be admitted for observation over night if I felt safer, or I could go home. It was up to me. Not being someone fond of the hospital, I said I wanted to go home. She said “OK, but first I need you to sign a form”
D asked what the form was and she said that it was a form about leaving against medical advice. Both of us said “no!” in no way shape or form were we going to sign that!
She became very angry with us for not signing and said that she’d do the admission, but the neurologist would probably be very mad.
I was taken up to the room where the nurses were much nicer, they were concerned and kept asking if they’d said anything to me about putting me on oxygen. I said no.
The neurologist came in early the next morning and asked me why my oxygen was off. I said I had no idea, as far as I know , none had been ordered.
He sat down next to me and explained that the Imuran and Mestinon were not doing enough to control so we would be starting Prednisone. Some myasthenics have an initial negative reaction, so I’d be in the hospital for at least a week while they started the Prednisone.
He was also going to order some breathing treatments since my sons had been sick with pneumonia. He didn’t want my body trying to fight off a pneumonia while starting on 100 mgs of prednisone.
I was very confused. I told him what had gone on in the ER and he let me know, in no uncertain terms, that HIS orders had been for admission, start oxygen and she was to let me know to plan on being there a week!
We talked a bit longer and then as he got up to leave it hit me. This is Sunday, the first of November! The Presidential election was on Tuesday! What would I do. He said he was sorry but I’d have to be here.
He walked back in and said “Wait, who are you voting for?” When I told him, he said “Ahh, great, I’ll see what I can do about getting you an absentee ballot. For the record, he was unable to do so, we lost the election and I’ve never let him live it down that he kept me from voting.
This one conversation started one of many, pleasant and interesting political discussions. (ones that would drive his nurse to distraction over the years to come!)
I got out of the hospital the following Monday … only to turn around to take Benjamin to the doctor on Wednesday. He was still fighting the pneumonia …or it was back, we were never quite sure. Either way, this time, the doctor felt he needed admission. He stayed from Wednesday to Sunday.
I was starting to wonder if our world would ever look any different than the road between our house and the hospital, the inside of a doctor’s office or the 4 walls of a hospital room.
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Tuesday, August 17, 2010
God Shared My Tears
It was a very hot day, I remember very little except that we had to take our child to the hospital for testing. It was July and the festivities of the day had ended in the ER, not with 1 child running a fever, but both. 2 IV’s for 1 and 1 IV for the other, and more Tylenol and Ibuprofen than I ever thought a little body could tolerate. I did not relax till 2 ½ year old S started to tell B that he’d be ok soon and if he wasn’t that he’d tell the doctor knock knock jokes till he did whatever was necessary to get him better enough to go home. The doctor heard that, and his eyes filled with tears, stepped away. I followed him. He said that he’d never seen a kid with that kind of logic so it made him laugh. But the the hope and faith that this top placed in him, was overwhelming. He asked me to let him gather his wits and he’d be in to check out the kids but he was sure that S at least could go home. B may need admission.
By the end of the day, both boys had been sent home and fevers were still there, but, they weren’t too bad. Both kids were willing to play some, listen to being read to and up to watching Bambi. It only took a few days for them to recover and bounce back to the great little boys they were in between their bouts of bronchitis, pneumonia, ear infections, the occasional kidney infection, plus the normal harmless colds, tummy aches and skinned knees.
B had found a formula he could keep down about half the time. He was taking in enough to account for that, yet, he seemed to not be growing. This, started to nag at a doctor or two but as of yet, they were just watching. Watching and waiting is a strange place to be for a problem solver. It became a common place for me. “watch and wait to see if this formula will work better” “watch and see if this virus will lead to a secondary bacterial infection” “watch and see if this third round of antibiotics will kick the infection” watch and see … and now it was watch and see if your baby will grow.
It was July, B was 7 months old. He was born at 9 lbs 8.75 oz. He’d lost weight and had trouble gaining but did gain it. I knew that at 5 months he should be double his birth weight. I wasn’t overly concerned that he wasn’t, because of the weight he’d lost. The family doctor may have told us at that it may play a roll, but technically, by 5 months, he should still be close to doubling his birth weight. Double would have a baby at 19 pounds. But B was 13. Even with having lost a bit, that didn’t account for it. He did not appear to be not getting enough calories, even with as often as he threw up (daily, with most feedings). He was pale and the eczema on his face just kept getting worse and worse which against that paper white skin looked like some kind of skin disease.
We took him to a dermatologist he’d seen before and he increased the steroidal cream, he again biopsied, not thinking he’d find anything that eczema, it seemed B was allergic to life. He reminded me that these steroid creams should be used daily, 2 times a day but in as thin of a coat as possible. It was still a steroid.
After we left the dermatologists office we went back to the Pink Palace for more tests. They gave him a ‘day admission’ (so they could feed him and us if necessary). They took him from me, apologizing that parents weren’t allowed in the sedation room or the MRI or CT scan rooms. They took my giggly little boy who thought the monkey on the technicians scrubs were silly. (they were fuzzy!) they took my vivacious sweet child and in a few minutes would give him medications that would put him to sleep and then place him into machines that scare adults. They’d give him IV’s for some medications for those tests. Then they’d transfer him down to nuclear medicine, still sedated but full of radiation, to do more tests. He would be scanned from head to toe and left pinky finger to right pinky finger. There would not be an inch of his body that would examined inside and out.
One of the reasons, I was told that the neurologist had ordered the CT scan was because his head had an unusual shape, large, yes but an odd shape that seemed to become more odd as time had gone by. They were going to find out if it was just a quirk, or if there was something to it.
After 4 hours of testing, poking prodding, they brought me back a fussy, half awake, throwing up child. They’d offered me lunch. I turned it down. There was no way that I could eat while I had no idea what my son was going through. My stomach in knots … and my heart on the verge of shattering … eating was not the priority.
The next day we had nothing on our agenda, a day at home. I got up, fixed the kids something to eat and looked at my self. Since the start of the medications, the lack of exercise my body was getting out of control. I skipped breakfast. Shortly before lunch, we went shopping as a family. We got some clothes for the boys, it seemed mute point to get anything for B who could still wear what he’d worn a couple of months ago, but there were some adorable matching outfits. We got them. Don went to the baby toys to entertain them while I ran to the pharmacy to pick up the prescriptions that were in and while I was there, I added 3 things to our order : diet pills, diuretics and Correctol. Diet pills, laxatives and diuretics. I could take them before I got sick, as long as I balanced them around my Mestinon I should be ok. The Diet Pills should only help in the energy level. We got home, I took my first diet pills and then went to make the boys lunch. I did not want any. D did not notice.
Dinner came and He insisted that I eat. My anger of being forced into eating was tempered only by the fact that I’d bought diuretics and laxatives. I ran into the bathroom to take them, and went and sat and ate dinner with my family. Shortly after, B threw up. We cleaned it up, and I used that as an excuse to ‘be sick’ and ran to the bathroom to rid myself of the food that had been so unwanted. The guilt over using my sons health as a way to do what I had wanted to do, I sat in the bathroom on the floor back to the wall until I could face my family again.
As I sat there I could hear the phone ring. D called me to the phone, it was Dr. Neuro. While he’d not seen the films in person, the radiologist had called and suggested we immediately deal with them. We had an appt to see him at 8 am before his first patient for the day.
I put my son to bed that night and held him for as long as I could. I had no idea what the world was going to be tomorrow. I knew it would change. I knew it wasn’t good. I knew there was more stress to come and this baby deserved none of it.
We got up, got the family ready to go. We’d sent S to spend the night at my mom’s so that we could focus 100% on B. We arrived and then we were taken immediately back. They’d not even taken time to stop and weigh/measure B. This, was an action that did nothing to decrease my anxiety.
We got into the room and before the nurse could shut it on the way out, Dr. Neuro and Dr. Development were on their way in, inviting the nurse to sit next to me. Dr. Neuro explained that he’d been concerned for a few week about the shape of B’s skull. To be on the safe side, he decided to to a CT and MRI. They let him now the night before that what he was looking for, was in fact there. He’d not seen the films yet, he wanted to get us in as soon as possible so we could form a plan.
He slapped the films up and as the light came on behind them, Dr. Neuro’s face blanched white and Dr. Developmental gasped. For the record, not seeing films before seeing patients is unfair to parents when something dramatic is found.
The cranial issue was obvious. It was a condition called Bicoronal craniosynostosis which is where both coronal sutures are pre maturely closing. It was responsible for some of the oddities in B’s appearance. His broad, almost non existent nose, his forehead being flat … a lot. The Dr’s expected to find that. The MRI had been ordered to make sure that there was no pressure on the brain from the Craniosynostosis. What the doctors did not expect was a brain that had not formed correctly. These malformations were so prominent, that me, who had never seen an x-ray of a child’s brain could see something was seriously wrong at the top and the bottom.
His frontal lobes had not developed fully. The Dr.Neuro explained it was called “Bi frontal lobe atrophy” and that in this case it did not mean a lessening of tissue, but rather a lack of tissue. It had never formed. The malformation at the back of the brain was one that was fairly severe but would hopefully not cause problems till adulthood. Arnold Chairi Malformation Type 1. The severity of ACM types is based on how many MM the brain is protruding into the cavity that is meant to be just that, a cavity. Had his been 1 MM longer, it would have been an ACM II.
He said that with the combination of the known delays that come with craniosynostosis, the already exhibited delays that B had shown, rather than waiting a year, as is often done, to start therapy we’d be put on an aggressive therapy regimen.
That day we were shoved into the world of Occupational Therapy, Speech Therapy and Physical Therapy. Given what they’d found the day before, they’d already set the appointments up. The doctor’s marched us first to the speech therapist. Explaining to the therapist the doctor explained that he’d been about 6 months old before he started to cry. And that we were having serious trouble getting him to eat food. The fact that ¾ of the food that he got down, came back up again, learning to eat right seemed rather urgent. I never knew that a child would need to see a speech therapist to learn to eat. I thought everyone just did that.
After speech therapy, Dr. Neuro was back and took us to the Physical and Occupational therapists. He introduced us, gave them a run down on his history as well as his diagnosis. He told them “we don’t know what to expect, give this child no ceilings.”
Dr Neuro hugged both my husband that night. I knew things were serious. He said to stop by the receptionists office on our way out for some paper work and information on what we were facing.
B went through a joint PT and OT eval that took 90 minutes. By the time we left, we were exhausted. We stopped to pick up McDonalds and then S. We went home. While Don fed the boys, I said I needed to take a bath. I did not know how I was going to get out of dinner but my stomach was in such knots, it wasn’t going to be happening tonight.
I ran the tub, and I climbed in, I cried like I’d not cried in a very long time. I cried more than when the boys had gone into the hospital. I cried more than when my son had had surgery. I cried more than I’d cried as a parent.
After about 15 minutes of sobbing as quietly as I could (so D couldn’t hear) I looked up and told God “there is no way that you can get this! No way you can understand how my heart is breaking. I know that you’ve said that you know all things that men face, but God, you’re not a mother! You can’t possibly know what it’s like to watch your child suffer the way I am and will be. “
As I finished my rant I looked over at the wall. A picture S had once found at a garage sale and that he’d placed so lovingly on the bathroom wall (even though I told him it belonged over his bed). It was a picture of Christ, with a crown of thorns on his head and a look of love for those causing him to suffer. It was the first time that I swear I could audibly hear the voice of God … “I watched my son suffer too”.
GOD SHARED MY TEARS
BY PEGGIKAYE EAGLER
When my heart was breaking,
And desperation was taking hold,
You reached down as promised,
Keeping my heart from growing cold.
You didn't lecture me,
Telling me to stand strong.
You didn't say 'fear not,'
Or tell me my faith was wrong.
I told you my heart was hurting.
My son would struggle all his life.
I could not bear the pain,
I begged you to end my strife.
You looked into my crying eyes,
Telling me to look into your heart.
You showed me that you'd hurt too,
I wasn't alone from the start!
A mother's heart can take so much
A breaking point it will reach.
Father, you understand that point,
And give comfort you don't preach!
The pain I felt, you understood,
Your only son you watched die.
My pain for my child not unique,
You share my tears,
And together we cry.
© Peggikaye Eagler
By the end of the day, both boys had been sent home and fevers were still there, but, they weren’t too bad. Both kids were willing to play some, listen to being read to and up to watching Bambi. It only took a few days for them to recover and bounce back to the great little boys they were in between their bouts of bronchitis, pneumonia, ear infections, the occasional kidney infection, plus the normal harmless colds, tummy aches and skinned knees.
B had found a formula he could keep down about half the time. He was taking in enough to account for that, yet, he seemed to not be growing. This, started to nag at a doctor or two but as of yet, they were just watching. Watching and waiting is a strange place to be for a problem solver. It became a common place for me. “watch and wait to see if this formula will work better” “watch and see if this virus will lead to a secondary bacterial infection” “watch and see if this third round of antibiotics will kick the infection” watch and see … and now it was watch and see if your baby will grow.
It was July, B was 7 months old. He was born at 9 lbs 8.75 oz. He’d lost weight and had trouble gaining but did gain it. I knew that at 5 months he should be double his birth weight. I wasn’t overly concerned that he wasn’t, because of the weight he’d lost. The family doctor may have told us at that it may play a roll, but technically, by 5 months, he should still be close to doubling his birth weight. Double would have a baby at 19 pounds. But B was 13. Even with having lost a bit, that didn’t account for it. He did not appear to be not getting enough calories, even with as often as he threw up (daily, with most feedings). He was pale and the eczema on his face just kept getting worse and worse which against that paper white skin looked like some kind of skin disease.
We took him to a dermatologist he’d seen before and he increased the steroidal cream, he again biopsied, not thinking he’d find anything that eczema, it seemed B was allergic to life. He reminded me that these steroid creams should be used daily, 2 times a day but in as thin of a coat as possible. It was still a steroid.
After we left the dermatologists office we went back to the Pink Palace for more tests. They gave him a ‘day admission’ (so they could feed him and us if necessary). They took him from me, apologizing that parents weren’t allowed in the sedation room or the MRI or CT scan rooms. They took my giggly little boy who thought the monkey on the technicians scrubs were silly. (they were fuzzy!) they took my vivacious sweet child and in a few minutes would give him medications that would put him to sleep and then place him into machines that scare adults. They’d give him IV’s for some medications for those tests. Then they’d transfer him down to nuclear medicine, still sedated but full of radiation, to do more tests. He would be scanned from head to toe and left pinky finger to right pinky finger. There would not be an inch of his body that would examined inside and out.
One of the reasons, I was told that the neurologist had ordered the CT scan was because his head had an unusual shape, large, yes but an odd shape that seemed to become more odd as time had gone by. They were going to find out if it was just a quirk, or if there was something to it.
After 4 hours of testing, poking prodding, they brought me back a fussy, half awake, throwing up child. They’d offered me lunch. I turned it down. There was no way that I could eat while I had no idea what my son was going through. My stomach in knots … and my heart on the verge of shattering … eating was not the priority.
The next day we had nothing on our agenda, a day at home. I got up, fixed the kids something to eat and looked at my self. Since the start of the medications, the lack of exercise my body was getting out of control. I skipped breakfast. Shortly before lunch, we went shopping as a family. We got some clothes for the boys, it seemed mute point to get anything for B who could still wear what he’d worn a couple of months ago, but there were some adorable matching outfits. We got them. Don went to the baby toys to entertain them while I ran to the pharmacy to pick up the prescriptions that were in and while I was there, I added 3 things to our order : diet pills, diuretics and Correctol. Diet pills, laxatives and diuretics. I could take them before I got sick, as long as I balanced them around my Mestinon I should be ok. The Diet Pills should only help in the energy level. We got home, I took my first diet pills and then went to make the boys lunch. I did not want any. D did not notice.
Dinner came and He insisted that I eat. My anger of being forced into eating was tempered only by the fact that I’d bought diuretics and laxatives. I ran into the bathroom to take them, and went and sat and ate dinner with my family. Shortly after, B threw up. We cleaned it up, and I used that as an excuse to ‘be sick’ and ran to the bathroom to rid myself of the food that had been so unwanted. The guilt over using my sons health as a way to do what I had wanted to do, I sat in the bathroom on the floor back to the wall until I could face my family again.
As I sat there I could hear the phone ring. D called me to the phone, it was Dr. Neuro. While he’d not seen the films in person, the radiologist had called and suggested we immediately deal with them. We had an appt to see him at 8 am before his first patient for the day.
I put my son to bed that night and held him for as long as I could. I had no idea what the world was going to be tomorrow. I knew it would change. I knew it wasn’t good. I knew there was more stress to come and this baby deserved none of it.
We got up, got the family ready to go. We’d sent S to spend the night at my mom’s so that we could focus 100% on B. We arrived and then we were taken immediately back. They’d not even taken time to stop and weigh/measure B. This, was an action that did nothing to decrease my anxiety.
We got into the room and before the nurse could shut it on the way out, Dr. Neuro and Dr. Development were on their way in, inviting the nurse to sit next to me. Dr. Neuro explained that he’d been concerned for a few week about the shape of B’s skull. To be on the safe side, he decided to to a CT and MRI. They let him now the night before that what he was looking for, was in fact there. He’d not seen the films yet, he wanted to get us in as soon as possible so we could form a plan.
He slapped the films up and as the light came on behind them, Dr. Neuro’s face blanched white and Dr. Developmental gasped. For the record, not seeing films before seeing patients is unfair to parents when something dramatic is found.
The cranial issue was obvious. It was a condition called Bicoronal craniosynostosis which is where both coronal sutures are pre maturely closing. It was responsible for some of the oddities in B’s appearance. His broad, almost non existent nose, his forehead being flat … a lot. The Dr’s expected to find that. The MRI had been ordered to make sure that there was no pressure on the brain from the Craniosynostosis. What the doctors did not expect was a brain that had not formed correctly. These malformations were so prominent, that me, who had never seen an x-ray of a child’s brain could see something was seriously wrong at the top and the bottom.
His frontal lobes had not developed fully. The Dr.Neuro explained it was called “Bi frontal lobe atrophy” and that in this case it did not mean a lessening of tissue, but rather a lack of tissue. It had never formed. The malformation at the back of the brain was one that was fairly severe but would hopefully not cause problems till adulthood. Arnold Chairi Malformation Type 1. The severity of ACM types is based on how many MM the brain is protruding into the cavity that is meant to be just that, a cavity. Had his been 1 MM longer, it would have been an ACM II.
He said that with the combination of the known delays that come with craniosynostosis, the already exhibited delays that B had shown, rather than waiting a year, as is often done, to start therapy we’d be put on an aggressive therapy regimen.
That day we were shoved into the world of Occupational Therapy, Speech Therapy and Physical Therapy. Given what they’d found the day before, they’d already set the appointments up. The doctor’s marched us first to the speech therapist. Explaining to the therapist the doctor explained that he’d been about 6 months old before he started to cry. And that we were having serious trouble getting him to eat food. The fact that ¾ of the food that he got down, came back up again, learning to eat right seemed rather urgent. I never knew that a child would need to see a speech therapist to learn to eat. I thought everyone just did that.
After speech therapy, Dr. Neuro was back and took us to the Physical and Occupational therapists. He introduced us, gave them a run down on his history as well as his diagnosis. He told them “we don’t know what to expect, give this child no ceilings.”
Dr Neuro hugged both my husband that night. I knew things were serious. He said to stop by the receptionists office on our way out for some paper work and information on what we were facing.
B went through a joint PT and OT eval that took 90 minutes. By the time we left, we were exhausted. We stopped to pick up McDonalds and then S. We went home. While Don fed the boys, I said I needed to take a bath. I did not know how I was going to get out of dinner but my stomach was in such knots, it wasn’t going to be happening tonight.
I ran the tub, and I climbed in, I cried like I’d not cried in a very long time. I cried more than when the boys had gone into the hospital. I cried more than when my son had had surgery. I cried more than I’d cried as a parent.
After about 15 minutes of sobbing as quietly as I could (so D couldn’t hear) I looked up and told God “there is no way that you can get this! No way you can understand how my heart is breaking. I know that you’ve said that you know all things that men face, but God, you’re not a mother! You can’t possibly know what it’s like to watch your child suffer the way I am and will be. “
As I finished my rant I looked over at the wall. A picture S had once found at a garage sale and that he’d placed so lovingly on the bathroom wall (even though I told him it belonged over his bed). It was a picture of Christ, with a crown of thorns on his head and a look of love for those causing him to suffer. It was the first time that I swear I could audibly hear the voice of God … “I watched my son suffer too”.
GOD SHARED MY TEARS
BY PEGGIKAYE EAGLER
When my heart was breaking,
And desperation was taking hold,
You reached down as promised,
Keeping my heart from growing cold.
You didn't lecture me,
Telling me to stand strong.
You didn't say 'fear not,'
Or tell me my faith was wrong.
I told you my heart was hurting.
My son would struggle all his life.
I could not bear the pain,
I begged you to end my strife.
You looked into my crying eyes,
Telling me to look into your heart.
You showed me that you'd hurt too,
I wasn't alone from the start!
A mother's heart can take so much
A breaking point it will reach.
Father, you understand that point,
And give comfort you don't preach!
The pain I felt, you understood,
Your only son you watched die.
My pain for my child not unique,
You share my tears,
And together we cry.
© Peggikaye Eagler
Thursday, August 12, 2010
Thymectomy
We drove to California with a not quite 6 month old and a 2 ½ year old. The boys traveled remarkably well. On both the way there and the way back we stopped at Yuma AZ to spend a couple of days with a life time friend of my husbands. I felt ok when we got there the first time, and not so good when we got back. It was the first time I became aware that no matter how good the medications, life was still going to be hard.
L’s parents were there to visit with his family as well as to see D. L’s parents were old fashioned, strict, pastor and wife, who had definitive ideas of what a man and a woman should be doing in a marriage. L’s mother caught me alone and read me the riot act for ‘allowing’ my husband to wait on me. There had been a few minutes where my legs just decided they were done moving. B needed a diaper change and feeding during this time. D changed him and got his bottle ready, handed him to me and this is what upset L’s mother. When I told her that I had a neuromuscular disease that occasionally makes it impossible to move, she said that did not matter, it was not the role of the father to change diapers or feed the child. To do so while I was ‘just sitting there’ was not only appalling, but a sin.
She got to me more than I’d like to have admitted. My vision of marriage and motherhood *was* that I’d be the one doting, waiting hand and foot on my spouse and child. Nothing about my life as a parent had allowed that vision to come true. It was a clear picture to me of things to come. The Mestinon and Imuran were not cures. They did not make the symptoms go away. They just made them sort of bearable.
We got back into town at 10 am June 1. We called the social security administration to start the process of applying for disability. We took a long nap, then I got up and got ready to go. Admission time for the hospital was at 4 PM.
I arrived there and they got me into a room before 5 PM. Shortly after they’d taken my vitals, gotten my history and made sure I was comfortable, the surgeon came in. He explained the procedure again, but in more detail this time. He told me that with Myasthenia Gravis, there are many drugs that make the disease worse. So even though they’d be cutting my sternum open, they would not be giving me morphine because it relaxes the muscles too much and can cause respiratory problems. They would be giving me Darvon instead.
My family stayed till visiting hours were over. I was instructed to shower and cover my entire chest with beta dine. (I never have understood why that was done the night before surgery for me to re gown and back into the same bed …but whatever). They came and got me at 6 AM the next day. My sister in law was there and fussed over me making sure I’d gotten the best anesthesiologist, the best nurses. She kept leaving her patient to check on me. They gave me the pre op medicine and soon after the anesthesiologist came over. I remember only one thing about this. I looked at him and said “Oh my! Your eyes are beautiful” I can still see those piercing blue eyes. The odd thing was that I am normally attracted to dark eyes, not blue ones. My sister in law assured me that I’d never remember it happening, so it did not matter. She was wrong, I remember it clearly.
They took me back to the OR and I drifted off to sleep to a BEEP BEEP BEEP BEEP BEEP BEEP BEEP. I had some strange dreams while I was under, but can’t recall any of them. When I woke up in the recovery room I was in a panic. Where were my kids? Were they ok? Who was taking care of my kids? I must have thought I had been in an accident.
When I stabilized, they moved me to ICU. There, I was cared for by nurses who were very caring. Gentle, and informative. They told me that because of my pain medicine, I’d sleep all day and likely not remember anything. If I needed to ask a question, don’t worry ask as many times as necessary. I did not feel that foggy brained, just EXHAUSTED.
Around 7 pm another nurse came in and told my nurse that someone was out there ‘claiming’ to be my brother. But he was blond, blue eyed and very apparently not related to me. It was very obvious by the tone that she thought there was something illicit going on between us. The idea was hilarious and I started to laugh. I told her to ask if his name is Terry, she said it is. I said “that’s my brother IN LAW”. The nurse giggled and apologized, then let him in. As he was coming in he remarked how alert I was. The nurse in the room said that it was strange the medication hadn’t really effected me other than to make me tired and relieve some pain. This, was a good thing.
My husband came in after Terry left, and he stayed with me till about an hour after visiting hours were over. Shortly before 10, he let my new nurse know that I needed my pain meds. The nurse, a rather rude male nurse said he’d check to see when the morphine was due. That got both of our attention VERY fast. We’d been told that morphine wasn’t going to be used. He went to double check and said that I’d been on morphine all day. My husband made it clear that we’d been told that morphine was not supposed to be used. He said that I’d have to wait for pain meds till the next morning when the doctor came in because he was not going to disturb the doctor to change pain meds.
This infuriated my husband and terrified me. Here I was 12 hours after having my chest cut wide open and this guy wanted me to go without pain meds. Shaking, *hurting* and scared I started to cry. My husband demanded to speak the nurses supervisor, NOW. The nurse agreed to call the doctor at that point. He called the surgeon who explained to him (and then him to us) that they’d pulled me off the vent in the ER, gave me Darvon and I abruptly stopped breathing. They had to re incubate, give me prostigmine (similar to Mestinon but not as long acting but not as short acting as the Tensilon) wait till I’d stabilized and gave me morphine. When there was no distinguishable difference in my muscles on and off morphine, they chose to use that instead. That information never made it to me or my family.
My husband still wanted to speak to the nursing supervisor. He was uncomfortable leaving me in the care of someone who was so willing to let me go all night without pain meds. The nursing supervisor was obviously annoyed, but not with us. She re assigned me to another nurse who was kind and caring.
3 days later I was moved to the regular floor. The respiratory therapist would come in every 2 hours and give me a breathing treatment. I looked forward to those, breathing became easier for a while after.
They had told me I’d be in for 5 days, but 8 days later, I was still there. Frustrated because I wasn’t gaining strength. On the 9th day, I was finally able to walk a bit, and saw the light at the end of the tunnel.
The evening of the 10th day, my husband called me and said that S had stopped eating, stopped talking, stopped. Period. He just sat there staring at the wall. This scared the daylights out of me and I heard my surgeons voice at the nurses station. I got up without help, walked to the nurses station and insisted on being released. It appeared the adrenalin of fear made moving in dissipate.
The next morning the release papers were filled out. D came to get me and took me home. A friend had been watching my sons for us. She brought them home when I was settled in. S sat down next to me on the couch and snuggled close. He still would not talk, but he at least took a half a sandwich. He would not move from my side till bedtime.
The next morning both boys woke up sick. As did my friends children. The neighborhood boy that had been over there playing had an infection that he spread to all 5 kids. One of A’s children had immune issues (which was how we met). Her neighbor knew that there were 3 immunodeficient children at her house, knew her son had ran a fever but gave him Tylenol and sent him over to get him out of her hair. Needless to say, both A and I were quite upset.
Sunday morning B woke up and not only had the fever he’d gone to bed with, but was coughing so bad he couldn’t seem to catch his breath. I called the doctor hoping for a cough suppressant and he wanted to see him. He met us in the ER and by the time we got there, WITH Tylenol in his system his fever was 104. I was not allowed to lift more than 5 pounds because of my surgery so D had to lift him.
B had pneumonia and was admitted to the hospital. The pediatric nurses were told by the doctor that I’d just had surgery and I was NOT to lift the child at all. (the advantages of a family doctor!) They would need to come in when he needed to be fed, hand him to me, and come back to burp him when we were done. They needed to change his diapers. They were more than a little miffed for having to do ‘parenting duties’.
While we were there, a baby across the hall from him started to cry. And cry. And cry. It was bothering B so I said something to the nurse. She shrugged and said “he’s been fed, changed, bathed and tended to. His parents aren’t here, only come for an hour or so a day then go on with their lives. We can only do so much.” They couldn’t leave his door shut, he needed to be able to be seen from the nurses station. So, even though I would get claustrophobic, it was our door that needed to be shut so B could rest.
They came in to add an IV and I stepped out into the hallway. They poked him with a needle to numb the area and B let out a HUGE scream and cry. This started me crying. Not from what most people thought, but because it was the first time I’d heard him cry. I wasn’t happy that it meant h was uncomfortable, but it was a real cry not an ‘eh eh eh eh eh’ that we’d been hearing. This had to be good news.
The next day a nurse was even more upset that she had to help me. She complained to her supervisor that it didn’t matter what had happened to me, my responsibility was to the infant first. The supervisor, within my ear shot said “her first priority is to make sure she heals correctly so that she CAN take care of her child.” An hour later, B started to cry in hunger. I called and the nurse didn’t come … I called again, she didn’t come. After 40 minutes I picked him up and sat down, the pain in my chest was excruciating!
About 2 hours later my husband came. He called my mom to get up there while he took me to the surgeon’s to make sure all was ok. My chest was burning to the touch, and sooo painful. The surgeon re iterated (though that was not necessary, I got it!) why it was important that I not pick up the baby. I’d popped a couple of stitches that he replaced, then with me in the room, called the pediatric floor and read the riot act to B’s nurse. When we got back the nursing supervisor was there to apologize and assure me that this would not happen again. We’d not see the nurse again and for the rest of the night, she’d be there to take care of that nurses patients.
L’s parents were there to visit with his family as well as to see D. L’s parents were old fashioned, strict, pastor and wife, who had definitive ideas of what a man and a woman should be doing in a marriage. L’s mother caught me alone and read me the riot act for ‘allowing’ my husband to wait on me. There had been a few minutes where my legs just decided they were done moving. B needed a diaper change and feeding during this time. D changed him and got his bottle ready, handed him to me and this is what upset L’s mother. When I told her that I had a neuromuscular disease that occasionally makes it impossible to move, she said that did not matter, it was not the role of the father to change diapers or feed the child. To do so while I was ‘just sitting there’ was not only appalling, but a sin.
She got to me more than I’d like to have admitted. My vision of marriage and motherhood *was* that I’d be the one doting, waiting hand and foot on my spouse and child. Nothing about my life as a parent had allowed that vision to come true. It was a clear picture to me of things to come. The Mestinon and Imuran were not cures. They did not make the symptoms go away. They just made them sort of bearable.
We got back into town at 10 am June 1. We called the social security administration to start the process of applying for disability. We took a long nap, then I got up and got ready to go. Admission time for the hospital was at 4 PM.
I arrived there and they got me into a room before 5 PM. Shortly after they’d taken my vitals, gotten my history and made sure I was comfortable, the surgeon came in. He explained the procedure again, but in more detail this time. He told me that with Myasthenia Gravis, there are many drugs that make the disease worse. So even though they’d be cutting my sternum open, they would not be giving me morphine because it relaxes the muscles too much and can cause respiratory problems. They would be giving me Darvon instead.
My family stayed till visiting hours were over. I was instructed to shower and cover my entire chest with beta dine. (I never have understood why that was done the night before surgery for me to re gown and back into the same bed …but whatever). They came and got me at 6 AM the next day. My sister in law was there and fussed over me making sure I’d gotten the best anesthesiologist, the best nurses. She kept leaving her patient to check on me. They gave me the pre op medicine and soon after the anesthesiologist came over. I remember only one thing about this. I looked at him and said “Oh my! Your eyes are beautiful” I can still see those piercing blue eyes. The odd thing was that I am normally attracted to dark eyes, not blue ones. My sister in law assured me that I’d never remember it happening, so it did not matter. She was wrong, I remember it clearly.
They took me back to the OR and I drifted off to sleep to a BEEP BEEP BEEP BEEP BEEP BEEP BEEP. I had some strange dreams while I was under, but can’t recall any of them. When I woke up in the recovery room I was in a panic. Where were my kids? Were they ok? Who was taking care of my kids? I must have thought I had been in an accident.
When I stabilized, they moved me to ICU. There, I was cared for by nurses who were very caring. Gentle, and informative. They told me that because of my pain medicine, I’d sleep all day and likely not remember anything. If I needed to ask a question, don’t worry ask as many times as necessary. I did not feel that foggy brained, just EXHAUSTED.
Around 7 pm another nurse came in and told my nurse that someone was out there ‘claiming’ to be my brother. But he was blond, blue eyed and very apparently not related to me. It was very obvious by the tone that she thought there was something illicit going on between us. The idea was hilarious and I started to laugh. I told her to ask if his name is Terry, she said it is. I said “that’s my brother IN LAW”. The nurse giggled and apologized, then let him in. As he was coming in he remarked how alert I was. The nurse in the room said that it was strange the medication hadn’t really effected me other than to make me tired and relieve some pain. This, was a good thing.
My husband came in after Terry left, and he stayed with me till about an hour after visiting hours were over. Shortly before 10, he let my new nurse know that I needed my pain meds. The nurse, a rather rude male nurse said he’d check to see when the morphine was due. That got both of our attention VERY fast. We’d been told that morphine wasn’t going to be used. He went to double check and said that I’d been on morphine all day. My husband made it clear that we’d been told that morphine was not supposed to be used. He said that I’d have to wait for pain meds till the next morning when the doctor came in because he was not going to disturb the doctor to change pain meds.
This infuriated my husband and terrified me. Here I was 12 hours after having my chest cut wide open and this guy wanted me to go without pain meds. Shaking, *hurting* and scared I started to cry. My husband demanded to speak the nurses supervisor, NOW. The nurse agreed to call the doctor at that point. He called the surgeon who explained to him (and then him to us) that they’d pulled me off the vent in the ER, gave me Darvon and I abruptly stopped breathing. They had to re incubate, give me prostigmine (similar to Mestinon but not as long acting but not as short acting as the Tensilon) wait till I’d stabilized and gave me morphine. When there was no distinguishable difference in my muscles on and off morphine, they chose to use that instead. That information never made it to me or my family.
My husband still wanted to speak to the nursing supervisor. He was uncomfortable leaving me in the care of someone who was so willing to let me go all night without pain meds. The nursing supervisor was obviously annoyed, but not with us. She re assigned me to another nurse who was kind and caring.
3 days later I was moved to the regular floor. The respiratory therapist would come in every 2 hours and give me a breathing treatment. I looked forward to those, breathing became easier for a while after.
They had told me I’d be in for 5 days, but 8 days later, I was still there. Frustrated because I wasn’t gaining strength. On the 9th day, I was finally able to walk a bit, and saw the light at the end of the tunnel.
The evening of the 10th day, my husband called me and said that S had stopped eating, stopped talking, stopped. Period. He just sat there staring at the wall. This scared the daylights out of me and I heard my surgeons voice at the nurses station. I got up without help, walked to the nurses station and insisted on being released. It appeared the adrenalin of fear made moving in dissipate.
The next morning the release papers were filled out. D came to get me and took me home. A friend had been watching my sons for us. She brought them home when I was settled in. S sat down next to me on the couch and snuggled close. He still would not talk, but he at least took a half a sandwich. He would not move from my side till bedtime.
The next morning both boys woke up sick. As did my friends children. The neighborhood boy that had been over there playing had an infection that he spread to all 5 kids. One of A’s children had immune issues (which was how we met). Her neighbor knew that there were 3 immunodeficient children at her house, knew her son had ran a fever but gave him Tylenol and sent him over to get him out of her hair. Needless to say, both A and I were quite upset.
Sunday morning B woke up and not only had the fever he’d gone to bed with, but was coughing so bad he couldn’t seem to catch his breath. I called the doctor hoping for a cough suppressant and he wanted to see him. He met us in the ER and by the time we got there, WITH Tylenol in his system his fever was 104. I was not allowed to lift more than 5 pounds because of my surgery so D had to lift him.
B had pneumonia and was admitted to the hospital. The pediatric nurses were told by the doctor that I’d just had surgery and I was NOT to lift the child at all. (the advantages of a family doctor!) They would need to come in when he needed to be fed, hand him to me, and come back to burp him when we were done. They needed to change his diapers. They were more than a little miffed for having to do ‘parenting duties’.
While we were there, a baby across the hall from him started to cry. And cry. And cry. It was bothering B so I said something to the nurse. She shrugged and said “he’s been fed, changed, bathed and tended to. His parents aren’t here, only come for an hour or so a day then go on with their lives. We can only do so much.” They couldn’t leave his door shut, he needed to be able to be seen from the nurses station. So, even though I would get claustrophobic, it was our door that needed to be shut so B could rest.
They came in to add an IV and I stepped out into the hallway. They poked him with a needle to numb the area and B let out a HUGE scream and cry. This started me crying. Not from what most people thought, but because it was the first time I’d heard him cry. I wasn’t happy that it meant h was uncomfortable, but it was a real cry not an ‘eh eh eh eh eh’ that we’d been hearing. This had to be good news.
The next day a nurse was even more upset that she had to help me. She complained to her supervisor that it didn’t matter what had happened to me, my responsibility was to the infant first. The supervisor, within my ear shot said “her first priority is to make sure she heals correctly so that she CAN take care of her child.” An hour later, B started to cry in hunger. I called and the nurse didn’t come … I called again, she didn’t come. After 40 minutes I picked him up and sat down, the pain in my chest was excruciating!
About 2 hours later my husband came. He called my mom to get up there while he took me to the surgeon’s to make sure all was ok. My chest was burning to the touch, and sooo painful. The surgeon re iterated (though that was not necessary, I got it!) why it was important that I not pick up the baby. I’d popped a couple of stitches that he replaced, then with me in the room, called the pediatric floor and read the riot act to B’s nurse. When we got back the nursing supervisor was there to apologize and assure me that this would not happen again. We’d not see the nurse again and for the rest of the night, she’d be there to take care of that nurses patients.
Wednesday, August 11, 2010
Roller Coasters
While in the hospital, B started to have more trouble with his stomach. I called the pediatric GI from my hospital room, and when he returned the call he was far more concerned with why I was calling from the hospital (and why was my family not taking the role of caregiver to the baby while I was in?). After he got B’s information down, and told me he’d change the formula and to come by to pick it up the next Monday, he asked why I was in.
He was more than alarmed and explained to me that infants can have a form of MG if they are born to mothers with it. B definitely fit the profile of a myasthenic baby and I needed to let the neurologist know. So, I called the neuro who said that his trouble swallowing was, in part, due to the MG as were the eyes that would not open. The antibodies are out of the baby’s body by 6 weeks and we are probably not seeing any more residual effects, but rather whatever is the cause of his delays. However, he said he wanted to apologize for thinking me to cold and uncaring when I was so sick I could barely move. As a neurologist, he felt bad because he should have been able to spot it. Hind sight, he realized he was looking at a myasthenic in serious condition sitting in his office. For that, he deeply apologized.
I stayed for 2 more days while they played with dosages and made sure I was tolerating it well. They discharged me with an Rx for Mestinon, and had even called around to find a pharmacy that had it in stock. That was my first cue that this is an awfully rare disease.
We got home and things seemed so utterly normal. Able to chew, dress myself and walk seemed so normal. It was kind of odd to fight with something day in and day out for well over 2 years and yet, it feel so normal when it was gone. To this day, the MG feels odd and never normal, the strength feels ‘normal’.
The Tuesday after I got out of the hospital we took B to see both the pediatric neurologist and the pediatric GI doctor. In between visits, they’d had a chance to talk and when we met with the GI doctor, we were told they wanted to admit B to the hospital for testing.
April 6, 1992 we took B to the “Pink Palace” a local hospital, not the one we normally dealt with. The irony of it’s nickname of a palace was not lost on me … no amount of pink could mask that they were about to make my son incredibly uncomfortable.
He was admitted and a “Child Life Specialist” came into the room to explain what we’d be dealing with. She explained the tests we were having done “Polysomnogram” included 5 different tests and would continue waking and sleeping. (Poly =5 and somno = sleep gram= test). They would take him from us and have him go through yet another EEG. Then they would sedate him, do an EDG and place a tube from his nose into his stomach. There would be a piece of tape on the tube so that it could be measured to ensure that the tube was staying in place. He would also have leads checking for heart and pulse the entire time, and a pulse ox on as well as running an IV during part of the time.
Shortly after, the doctors came in together, and made sure we understood what was happening. We were told that during the next 3 days at some point they would be drawing us out of the room to take Infant/Child CPR. Up to that moment in time, it is one of the scariest things I’ve ever been told. Something was so wrong with my child that I would need to know CPR. I also did not understand how I was supposed to absorb all of the information.
They came and took him away and after a couple of hours brought back a very alert baby. They were somewhat concerned because they could not seem to sedate him fully, but even more bothersome, they never heard him cry. As the girl laid him down, he started going “eh eh eh eh” and I told her that was his version of crying. That, alarmed them. (though trust me, not as much as it did me!)
They gave us a picture of him with EEG wires attached. I sat down and held him, and stared at the picture for about 2 hours. A nurse came in and said they needed to feed him while a certain test was being run. So, they handed me a bottle, while the nurse evaluated everything that was going on. She kept writing on the EKG lead … and then, as usual when the feeding was over I pulled the bottle out and he decided to show the nurse what the cause of all this was ..he threw up all over me, all over her and all over her shoes.
We lasted the 72 hours on the testing. We managed to get through the Infant Child CPR classes, but during that class, I kept tearing up. I was fighting crying. I knew I needed to hear everything that was said. We had no way of knowing this at the time, but it would not be B that we needed this information for!
They asked if they could monitor him one more night. While the doctors were in the room, my mom called. S had 105 fever. They decided to forgo the extra night and send us home. We got home from the pink palace to turn right back around and take S to the ER at another hospital. The primary care doctor had been told by the specialists what was going on and he met us at the hospital.
Samuel had another ear infection. He’d had tubes put in his ears in January, but one of them had turned and was causing an infection. It isn’t a normal complication, but apparently did happen. The primary doc called the ENT and he came up the hospital to remove the tube and scheduled S for a replacement in the morning. We spent the night at that hospital, S had the tube replaced and then we went home. All told 5 days in the hospital with 2 children in 2 hospitals.
I had arranged a follow up appt at the medical school. The doctor that they had me see (resident rather) said that her goal was to get me off the medicine as soon as possible and that she felt the surgery was not called for. She said I was much too young to have that drastic of a surgery.
I left very confused because I’d been told that the medications I was taking were not like some meds, they needed to be taken and unless I went into remission (which I’ve never done) they would be taken for a lifetime. They had also told me the thymectomy was being done because I was under 30. If I’d been over 30 they would not be able to do that surgery. (they now do thymectomies regardless of your age).
I called the neurologist that they’d had me see in the hospital who was more than happy to take me on as a patient. I would be his 7th Myasthenic in his practice over his career. (which doesn’t sound like a lot, but it is a lot for a neurologist in a non medical school setting). Since then, he’s had over 20 with people coming from all over the state to see him. It’s been 18 years and I’m still with him.
I went into see him and we brought B with us. He became fascinated with him because he didn’t ‘look right’ . I told him what was going on and he gave him a cursory exam (more out of curiosity than anything, also looking to see if there might be some connection to his issues with mine beside the neonatal MG). He did not say much, other than he was sorry and he understood how difficult it was to have a child with issues. (I found out later that his son had had a stroke at birth …just 8 months before B was born.)
He gave me a neuro exam and he watched me walk. A series of ‘tests’ I’d go through every 6 weeks for several years to come. He made some adjustments on my medications and got me scheduled to go see the surgeon that would be doing the thymectomy. Dr M (yes, this does make the third Dr. M .. family, pediatric neuro and neuro were all Dr. M) said he’d see me in the hospital June 1.
The next day we met up with the surgeon. A FOUR hour wait in the waiting room left me worn out and tired and realizing that leaving the house without my Mestinon was not a smart idea. By the time he saw me, I was having trouble breathing and walking. The doctor asked how far away we lived. Told my husband I’d be longer than that, to please go home and bring back the Mestinon. He did, when he brought it back, they gave me some and then proceeded with the testing. By the time I left his office, I was exhausted, but feeling better than when he’d first called me back.
On the way home from his office, I told D that I needed to see my Dad before the surgery. We decided to take a trip to California to see my Dad. The idea of having my chest cut open was leaving me scared. I needed the familiarity of my father, and my home.
He was more than alarmed and explained to me that infants can have a form of MG if they are born to mothers with it. B definitely fit the profile of a myasthenic baby and I needed to let the neurologist know. So, I called the neuro who said that his trouble swallowing was, in part, due to the MG as were the eyes that would not open. The antibodies are out of the baby’s body by 6 weeks and we are probably not seeing any more residual effects, but rather whatever is the cause of his delays. However, he said he wanted to apologize for thinking me to cold and uncaring when I was so sick I could barely move. As a neurologist, he felt bad because he should have been able to spot it. Hind sight, he realized he was looking at a myasthenic in serious condition sitting in his office. For that, he deeply apologized.
I stayed for 2 more days while they played with dosages and made sure I was tolerating it well. They discharged me with an Rx for Mestinon, and had even called around to find a pharmacy that had it in stock. That was my first cue that this is an awfully rare disease.
We got home and things seemed so utterly normal. Able to chew, dress myself and walk seemed so normal. It was kind of odd to fight with something day in and day out for well over 2 years and yet, it feel so normal when it was gone. To this day, the MG feels odd and never normal, the strength feels ‘normal’.
The Tuesday after I got out of the hospital we took B to see both the pediatric neurologist and the pediatric GI doctor. In between visits, they’d had a chance to talk and when we met with the GI doctor, we were told they wanted to admit B to the hospital for testing.
April 6, 1992 we took B to the “Pink Palace” a local hospital, not the one we normally dealt with. The irony of it’s nickname of a palace was not lost on me … no amount of pink could mask that they were about to make my son incredibly uncomfortable.
He was admitted and a “Child Life Specialist” came into the room to explain what we’d be dealing with. She explained the tests we were having done “Polysomnogram” included 5 different tests and would continue waking and sleeping. (Poly =5 and somno = sleep gram= test). They would take him from us and have him go through yet another EEG. Then they would sedate him, do an EDG and place a tube from his nose into his stomach. There would be a piece of tape on the tube so that it could be measured to ensure that the tube was staying in place. He would also have leads checking for heart and pulse the entire time, and a pulse ox on as well as running an IV during part of the time.
Shortly after, the doctors came in together, and made sure we understood what was happening. We were told that during the next 3 days at some point they would be drawing us out of the room to take Infant/Child CPR. Up to that moment in time, it is one of the scariest things I’ve ever been told. Something was so wrong with my child that I would need to know CPR. I also did not understand how I was supposed to absorb all of the information.
They came and took him away and after a couple of hours brought back a very alert baby. They were somewhat concerned because they could not seem to sedate him fully, but even more bothersome, they never heard him cry. As the girl laid him down, he started going “eh eh eh eh” and I told her that was his version of crying. That, alarmed them. (though trust me, not as much as it did me!)
They gave us a picture of him with EEG wires attached. I sat down and held him, and stared at the picture for about 2 hours. A nurse came in and said they needed to feed him while a certain test was being run. So, they handed me a bottle, while the nurse evaluated everything that was going on. She kept writing on the EKG lead … and then, as usual when the feeding was over I pulled the bottle out and he decided to show the nurse what the cause of all this was ..he threw up all over me, all over her and all over her shoes.
We lasted the 72 hours on the testing. We managed to get through the Infant Child CPR classes, but during that class, I kept tearing up. I was fighting crying. I knew I needed to hear everything that was said. We had no way of knowing this at the time, but it would not be B that we needed this information for!
They asked if they could monitor him one more night. While the doctors were in the room, my mom called. S had 105 fever. They decided to forgo the extra night and send us home. We got home from the pink palace to turn right back around and take S to the ER at another hospital. The primary care doctor had been told by the specialists what was going on and he met us at the hospital.
Samuel had another ear infection. He’d had tubes put in his ears in January, but one of them had turned and was causing an infection. It isn’t a normal complication, but apparently did happen. The primary doc called the ENT and he came up the hospital to remove the tube and scheduled S for a replacement in the morning. We spent the night at that hospital, S had the tube replaced and then we went home. All told 5 days in the hospital with 2 children in 2 hospitals.
I had arranged a follow up appt at the medical school. The doctor that they had me see (resident rather) said that her goal was to get me off the medicine as soon as possible and that she felt the surgery was not called for. She said I was much too young to have that drastic of a surgery.
I left very confused because I’d been told that the medications I was taking were not like some meds, they needed to be taken and unless I went into remission (which I’ve never done) they would be taken for a lifetime. They had also told me the thymectomy was being done because I was under 30. If I’d been over 30 they would not be able to do that surgery. (they now do thymectomies regardless of your age).
I called the neurologist that they’d had me see in the hospital who was more than happy to take me on as a patient. I would be his 7th Myasthenic in his practice over his career. (which doesn’t sound like a lot, but it is a lot for a neurologist in a non medical school setting). Since then, he’s had over 20 with people coming from all over the state to see him. It’s been 18 years and I’m still with him.
I went into see him and we brought B with us. He became fascinated with him because he didn’t ‘look right’ . I told him what was going on and he gave him a cursory exam (more out of curiosity than anything, also looking to see if there might be some connection to his issues with mine beside the neonatal MG). He did not say much, other than he was sorry and he understood how difficult it was to have a child with issues. (I found out later that his son had had a stroke at birth …just 8 months before B was born.)
He gave me a neuro exam and he watched me walk. A series of ‘tests’ I’d go through every 6 weeks for several years to come. He made some adjustments on my medications and got me scheduled to go see the surgeon that would be doing the thymectomy. Dr M (yes, this does make the third Dr. M .. family, pediatric neuro and neuro were all Dr. M) said he’d see me in the hospital June 1.
The next day we met up with the surgeon. A FOUR hour wait in the waiting room left me worn out and tired and realizing that leaving the house without my Mestinon was not a smart idea. By the time he saw me, I was having trouble breathing and walking. The doctor asked how far away we lived. Told my husband I’d be longer than that, to please go home and bring back the Mestinon. He did, when he brought it back, they gave me some and then proceeded with the testing. By the time I left his office, I was exhausted, but feeling better than when he’d first called me back.
On the way home from his office, I told D that I needed to see my Dad before the surgery. We decided to take a trip to California to see my Dad. The idea of having my chest cut open was leaving me scared. I needed the familiarity of my father, and my home.
Tuesday, August 10, 2010
The Beginning of a New Era
They admitted me to the hospital and the next day I was put through a series of tests. A full evoked potentials, lots of blood work and an EMG.
The EMG is a test where they take little needles and insert them into the arm, leg, face, neck into a nerve and send an electrical impulse to check the nerve reaction. In me, they were looking to see if the reaction was less significant with each impulse, it did.
The doctor doing the EMG was asking me questions throughout the whole test. About the 4th needle poke, he asked me if I’d ever heard of Myasthenia Gravis. I’d not recognized it as the words used by the residents, and said “no”. He did a couple of more pokes and started to explain the nature of MG to me.
When the test was over, he sent me up to my room telling me that now that we have the answers, things would get much better.
That evening they explained to me, my husband, mother and sister what Myasthenia Gravis was. (I also asked them to write it because I could not understand what they were saying “Mya what?” ) They explained that they had one more test to do in the morning and if that was positive they would immediately start me on the appropriate treatment.
I went to sleep that night in the hospital, not sure if I was relieved or scared. I had no idea what to think. I slept fitfully and woke up the next morning more tired than I’d been when I went to sleep.
Around 10 that morning the attending physician for OU came into my room with an IV needle and 2 viles. He asked my permission to have residents and medical students observe the test .The test is called a Tensilon test. It was such a rarely performed test, it may be the only time they got to see it. I agreed and immediately 11 doctors and medical students piled into my room. On their heels were 4 other doctors who had heard it was going on. The resident that first figured out it was Myasthenia Gravis was not there. He had an emergency on another floor.
They had me lift my leg as high as I could, I was unable to get it an inch off the bed. My arms I could only raise about 3 inches. They handed me a blood pressure cuff to squeeze as many times as I could. I pumped it 2 times then couldn’t get the rubber to budge. They had me say the alphabet and I slurred as many letters as not.
The doctor explained that the reason for that was that they would re do them after the medicine and measure results. He had 2 medicines, the first would be given and they’d repeat the legs/arms/alphabet tests, then they’d give the second. They gave the first and nothing happened. If anything, I’d done worse, I was unable to lift my leg at all or squeeze the bulb.
They gave the second medicine and said to wait about 30 seconds. After 30 seconds they asked me to lift my leg as high as I could. It shot clear up as if I was still in my cheerleading days! My arms both raised up and down and up and down and up and down. They handed me the cuff and I started to squeeze it, all the way in over and over and over and over again. I could talk without slurring and the double vision that had been a constant for over 2 years was gone!!
It was a miracle! The resident that had figured out it was MG came walking into the room and the attending said “you missed it, it was a gross success”
The Resident came over and gave me a hug. Then they warned me that there was only a 5 minute half life. Very soon after the warning, my vision started to go and the weakness came back with a vengeance. My muscles were not happy to have been used so much in so short of a time and let me know.
A nurse came walking in with a little white pill. The doctor explained to me that it was a drug called Mestinon and that it was similar to the Tensilon except that it has a 2 hour half life and is not as complete it it’s ability to resolve symptoms. It would help to control them, not make them go away as the Tensilon had.
They spent the next 20 minutes talking to me, explaining what MG was: An autoimmune disease that often has the onset suddenly following a physical trauma. The most common onset causes are car accidents, flu and childbirth. It is so sudden that you’re OK one day and ill the next. The damage it does is immediate.
The Mestinon was not a treatment for the disease, it is a symptom control medication. They needed to do a surgery called a thymectomy. Again, it sounded foreign to me and they had to explain in detail. The thymus is a gland that is part of the immune system, it is right behind the breast bone in the middle. Research has shown that the thymus may play a role in the disease Myasthenia Gravis. They would be opening my chest, just like for open heart surgery, but my heart would not be touched. They would remove the thymus. In some areas of the country they would go through the cervical area and remove it laprascopically but it had not been proven to be as effective and that there had been cases of thymus being left in, which then had to be removed with the transsternal method. It wasn’t an option for me, as there were no doctors willing to do the transcervical on me.
Around 12:30 pm, I started to feel more tired again. It had been 2 hours since the Mestinon and I could feel my strength dissipating by the minute. I called the nurse in and she said she’d let the doctors know, but it was scheduled to be given at 3 hours. A few minutes later she came in and said that they were going to give me another at 1, and then at 1:30 a neurologist would be in to see me. They needed the Mestinon to be in my system for 30 minutes, so I needed to hang on till then.
I laid in bed, feeling my energy dissipate by the minute, watching the clock till 1 pm … feeling desperate and scared as this miracle pill became less and less effective. By 12:55 I was in tears because I could barely move again. The fear that the next dose would not work was palpable. What if they’d given me just enough of an insight of what normal felt like only to have it never happen again. Memories of feeling normal during labor and having it come back were front and center in my brain.
The nurse came in to find me in tears. She gave me the Mestinon, which I had trouble swallowing, but finally got it down. She held me for a while, letting me cry, literally on her shoulder. She talked to me in a soothing voice assuring me that I did have MG and that the meds would work again. By 1:15, the feeling of strength came back and I was able to breathe and the tears dried up. The nurse left my room and said the neuro would be in shortly.
At 1:30 a man came into my room, shook my hand and told me that he was Dr. M. He had been called in by OU medical to evaluate and establish dose of the Mestinon. He explained that too much Mestinon gives side effects like : weakness increasing with use, sweating, stomach cramping, diarrhea and nausea. Because of this we had to balance how much to take without taking too much. Patients often continue to overdose because of the weakness. Too much Mestinon can be similar to too little.
He also explained that the thymectomy should be done sooner than later. I told him that my husband was a student in another town and was unable to be there till full time to take care of me and the kids till school was out, and my mom was a teacher so she had the same problem. He said June would be fine, but don’t wait any longer than necessary. He then explained that after the surgery I’d be started on a drug called Imuran and another one called Prednisone.
The explanation of the suppression of the immune system to treat this disease went way over my head. He said it was ok because it’d be a bit before I was started on them and by then, I’d understand.
He asked me to get out of bed while he watched me walk and step up on a stool and several other things that I’d not been able to do in a very long time. I was able to do them and kept crying. He’d laugh as I’d cry. He told me that this experience is one of the most rewarding of being a neurologist. The little white pill that changes a life from unable to move to able to move and watching the joy fall down cheeks in the form of tears … it doesn’t’ t happen often in medicine, but when it does, it’s a high point.
He left me and said that he’d order the Mestinon for every 3 hours, but did not want it closer because of the overdose issue.
An hour later, he came back, the Mestinon was wearing off and my frustration was rising. He had me repeat the tests a couple of times, each time it was harder than the last. This time, the tears were of frustration.
When the 3 hours were up, the nurse came in. I’d learned very early that I was going to love this new medicine.
The next morning my sister in law came to see me. She was on a break from her job as a nurse in the surgery unit. We talked and laughed and I got up to walk her to the elevators. A truly exciting experience for me. As we were walking down the hallway she dropped a bomb on me. “I called mom and said that there really *WAS* something wrong with you and that you’d not been faking it after all.”
That took the breath out of me and I could feel the blushing rise to my face. Anger and frustration. How could she have seen me day in and day out and thought that I was faking?
The EMG is a test where they take little needles and insert them into the arm, leg, face, neck into a nerve and send an electrical impulse to check the nerve reaction. In me, they were looking to see if the reaction was less significant with each impulse, it did.
The doctor doing the EMG was asking me questions throughout the whole test. About the 4th needle poke, he asked me if I’d ever heard of Myasthenia Gravis. I’d not recognized it as the words used by the residents, and said “no”. He did a couple of more pokes and started to explain the nature of MG to me.
When the test was over, he sent me up to my room telling me that now that we have the answers, things would get much better.
That evening they explained to me, my husband, mother and sister what Myasthenia Gravis was. (I also asked them to write it because I could not understand what they were saying “Mya what?” ) They explained that they had one more test to do in the morning and if that was positive they would immediately start me on the appropriate treatment.
I went to sleep that night in the hospital, not sure if I was relieved or scared. I had no idea what to think. I slept fitfully and woke up the next morning more tired than I’d been when I went to sleep.
Around 10 that morning the attending physician for OU came into my room with an IV needle and 2 viles. He asked my permission to have residents and medical students observe the test .The test is called a Tensilon test. It was such a rarely performed test, it may be the only time they got to see it. I agreed and immediately 11 doctors and medical students piled into my room. On their heels were 4 other doctors who had heard it was going on. The resident that first figured out it was Myasthenia Gravis was not there. He had an emergency on another floor.
They had me lift my leg as high as I could, I was unable to get it an inch off the bed. My arms I could only raise about 3 inches. They handed me a blood pressure cuff to squeeze as many times as I could. I pumped it 2 times then couldn’t get the rubber to budge. They had me say the alphabet and I slurred as many letters as not.
The doctor explained that the reason for that was that they would re do them after the medicine and measure results. He had 2 medicines, the first would be given and they’d repeat the legs/arms/alphabet tests, then they’d give the second. They gave the first and nothing happened. If anything, I’d done worse, I was unable to lift my leg at all or squeeze the bulb.
They gave the second medicine and said to wait about 30 seconds. After 30 seconds they asked me to lift my leg as high as I could. It shot clear up as if I was still in my cheerleading days! My arms both raised up and down and up and down and up and down. They handed me the cuff and I started to squeeze it, all the way in over and over and over and over again. I could talk without slurring and the double vision that had been a constant for over 2 years was gone!!
It was a miracle! The resident that had figured out it was MG came walking into the room and the attending said “you missed it, it was a gross success”
The Resident came over and gave me a hug. Then they warned me that there was only a 5 minute half life. Very soon after the warning, my vision started to go and the weakness came back with a vengeance. My muscles were not happy to have been used so much in so short of a time and let me know.
A nurse came walking in with a little white pill. The doctor explained to me that it was a drug called Mestinon and that it was similar to the Tensilon except that it has a 2 hour half life and is not as complete it it’s ability to resolve symptoms. It would help to control them, not make them go away as the Tensilon had.
They spent the next 20 minutes talking to me, explaining what MG was: An autoimmune disease that often has the onset suddenly following a physical trauma. The most common onset causes are car accidents, flu and childbirth. It is so sudden that you’re OK one day and ill the next. The damage it does is immediate.
The Mestinon was not a treatment for the disease, it is a symptom control medication. They needed to do a surgery called a thymectomy. Again, it sounded foreign to me and they had to explain in detail. The thymus is a gland that is part of the immune system, it is right behind the breast bone in the middle. Research has shown that the thymus may play a role in the disease Myasthenia Gravis. They would be opening my chest, just like for open heart surgery, but my heart would not be touched. They would remove the thymus. In some areas of the country they would go through the cervical area and remove it laprascopically but it had not been proven to be as effective and that there had been cases of thymus being left in, which then had to be removed with the transsternal method. It wasn’t an option for me, as there were no doctors willing to do the transcervical on me.
Around 12:30 pm, I started to feel more tired again. It had been 2 hours since the Mestinon and I could feel my strength dissipating by the minute. I called the nurse in and she said she’d let the doctors know, but it was scheduled to be given at 3 hours. A few minutes later she came in and said that they were going to give me another at 1, and then at 1:30 a neurologist would be in to see me. They needed the Mestinon to be in my system for 30 minutes, so I needed to hang on till then.
I laid in bed, feeling my energy dissipate by the minute, watching the clock till 1 pm … feeling desperate and scared as this miracle pill became less and less effective. By 12:55 I was in tears because I could barely move again. The fear that the next dose would not work was palpable. What if they’d given me just enough of an insight of what normal felt like only to have it never happen again. Memories of feeling normal during labor and having it come back were front and center in my brain.
The nurse came in to find me in tears. She gave me the Mestinon, which I had trouble swallowing, but finally got it down. She held me for a while, letting me cry, literally on her shoulder. She talked to me in a soothing voice assuring me that I did have MG and that the meds would work again. By 1:15, the feeling of strength came back and I was able to breathe and the tears dried up. The nurse left my room and said the neuro would be in shortly.
At 1:30 a man came into my room, shook my hand and told me that he was Dr. M. He had been called in by OU medical to evaluate and establish dose of the Mestinon. He explained that too much Mestinon gives side effects like : weakness increasing with use, sweating, stomach cramping, diarrhea and nausea. Because of this we had to balance how much to take without taking too much. Patients often continue to overdose because of the weakness. Too much Mestinon can be similar to too little.
He also explained that the thymectomy should be done sooner than later. I told him that my husband was a student in another town and was unable to be there till full time to take care of me and the kids till school was out, and my mom was a teacher so she had the same problem. He said June would be fine, but don’t wait any longer than necessary. He then explained that after the surgery I’d be started on a drug called Imuran and another one called Prednisone.
The explanation of the suppression of the immune system to treat this disease went way over my head. He said it was ok because it’d be a bit before I was started on them and by then, I’d understand.
He asked me to get out of bed while he watched me walk and step up on a stool and several other things that I’d not been able to do in a very long time. I was able to do them and kept crying. He’d laugh as I’d cry. He told me that this experience is one of the most rewarding of being a neurologist. The little white pill that changes a life from unable to move to able to move and watching the joy fall down cheeks in the form of tears … it doesn’t’ t happen often in medicine, but when it does, it’s a high point.
He left me and said that he’d order the Mestinon for every 3 hours, but did not want it closer because of the overdose issue.
An hour later, he came back, the Mestinon was wearing off and my frustration was rising. He had me repeat the tests a couple of times, each time it was harder than the last. This time, the tears were of frustration.
When the 3 hours were up, the nurse came in. I’d learned very early that I was going to love this new medicine.
The next morning my sister in law came to see me. She was on a break from her job as a nurse in the surgery unit. We talked and laughed and I got up to walk her to the elevators. A truly exciting experience for me. As we were walking down the hallway she dropped a bomb on me. “I called mom and said that there really *WAS* something wrong with you and that you’d not been faking it after all.”
That took the breath out of me and I could feel the blushing rise to my face. Anger and frustration. How could she have seen me day in and day out and thought that I was faking?
Monday, August 9, 2010
Answers
During this time, my strength had managed to decrease exponentially. Unable to stand for more than a few minutes without my legs collapsing, showers were no longer possible. We had a garden tub in our master bath that had a side to sit on, and stairs. My husband would lift my legs over the edge to put them in. He then would wash my hair and help me to bathe. Then we’d drain the water, because just being in the warm water seemed to drain me. After I’d recovered a bit, he’d help me to inch my way back to the edge, and he’d help me get my legs back over and then into a robe where I’d lay in bed for 2 hours to recover.
Walking was next to impossible, I fell almost daily. Chewing took on new challenges as I was unable to chew bread, anything crunchy or with texture. I’d eat yogurt, scrambled eggs, (which still required me to use my hand to force my jaw up and down). I found that anything that required chewing would require me to drink something at the same time to soften the food. However, as often as not, the process of trying to balance solid foods with the liquid would cause me to choke as I inhaled the liquid.
My family doctor had sent me to specialists at OU Medical Center. A resident saw me and she ordered a bunch of tests. When she found out that no outpatient testing was done, she said “well, it’s more serious than chronic fatigue syndrome and I can’t think what it would be, so I’m going to say MS till we have proof it’s not.” She scheduled me to come back in Mid March.
A few days after we’d spoken with the GI doc, we were at Children’s Medical Center for an EEG, so that before we met with the pediatric neurologist, the EEG would be done.
The next Monday, March 9, 1992 we went to see the neurologist. I was completely unable to dress that day. D had to help with each step of the process.
We arrived at CMC and checked in. They took us back to the exam room. I sat in the corner, barely able to move, talking took so much effort that I left it to D to explain why we were there. The doctor asked us to get him out of the carrier for an examination and D got up to do so. I got a judgmental look from both the nurse and the neurologist. They had no idea I was as sick as I was, they thought I just was on disconnect.
He talked to us about the seizure and explained that it hadn’t been epilepsy. It had been because his throwing up (which B decided that since he’d demonstrated for everyone else, he might as well demonstrate for the neuro as well) had been so severe he’d not gotten enough oxygen and that is what caused the seizure. Having been a child that would hold my breath till I passed out and then had a seizure, I was familiar with the process.
He was concerned that his muscle tone was poor. That he’d not developed past the new born stage at all. While the seizure did not concern him, much else did. He wanted us to return in 3 weeks. He gave us some exercises to do with him.
The next morning, I woke up, D got B out of his crib and we both headed to the living room. D was going to change him and then give him to me to feed.
We have a few pictures of this, my feeding him. I did not hold the bottle. I held him and was unable to hold the 4 oz bottle. My coordination was gone and it took way too much strength to keep my hand in place. Someone would place him in my arms, and put the bottle in his mouth, prop it with a cloth diaper. I would hold him a little ways out, if I cuddled him close, he’d stiffen up and refuse to eat.
There is little that has ever caused me to feel like a complete and utter failure except my son refusing to allow me to hold him close. I did not know it at the time, but that was an important clue as to what was facing us.
Holding him toward the end of my knees one hand under him, the other holding his foot and a cloth diaper to hold the bottle. Hoping that we’d time things right to get the bottle out of his mouth and him sitting before he threw up was quite the battle.
D was changing him while I went to the bathroom. I came out and turned to sit down. I could no longer sit, but rather braced my legs against the couch (or chair) and dropped. D was changing B on the floor where I’d be sitting on the couch. As I turned, I felt my legs collapse. My arms went between me and I landed in an arch over my son.
I wrenched my shoulder, but my son was ok. I’d arched enough in the fall to protect him.
This shook me to my core. I could have seriously injured my son. We’d planned on taking my mom out to eat to thank her for her assistance with S during the end of the pregnancy and hospitalizations. We kept thinking I’d feel better tomorrow. We decided that nothing was changing, so we’d take her out.
That night, I went to leave the house to go to dinner with my family and My legs would not allow me to step down that first step. My mom and D decided to help me by getting the couch cushions for me to drop down on. They guided my fall, then helped me to butt scoot down the stairs. They both helped me up, loaded me and the kids into the car and off to dinner we went.
We came back to my house and I was unable to move my leg to get up to the stairs. Between my wrenched shoulder and that, D and Mom decided it would be best for me to go to the ER. I did.
A doctor we’d seen several times with S was there. He examined me and was visibly worried. He told D that he’s been watching me decline over the last 2 ½ years and we need to find out what was wrong. He was going to admit me.
He called the Medical School and they said “she has an appt send her home”. He then said “I’m admitting your patient, get your doctors down here.” I had no idea at the time, but Dr. R probably saved my life.
A resident came down and examined me. He said he thought he knew what was going on, but wanted another opinion. He called another resident down and would not talk to him he wanted a non biased thought. So, the second resident examined me. When he was done the first came over and they looked at each other and without blinking both said, simultaneously, “Myasthenia Gravis”
Walking was next to impossible, I fell almost daily. Chewing took on new challenges as I was unable to chew bread, anything crunchy or with texture. I’d eat yogurt, scrambled eggs, (which still required me to use my hand to force my jaw up and down). I found that anything that required chewing would require me to drink something at the same time to soften the food. However, as often as not, the process of trying to balance solid foods with the liquid would cause me to choke as I inhaled the liquid.
My family doctor had sent me to specialists at OU Medical Center. A resident saw me and she ordered a bunch of tests. When she found out that no outpatient testing was done, she said “well, it’s more serious than chronic fatigue syndrome and I can’t think what it would be, so I’m going to say MS till we have proof it’s not.” She scheduled me to come back in Mid March.
A few days after we’d spoken with the GI doc, we were at Children’s Medical Center for an EEG, so that before we met with the pediatric neurologist, the EEG would be done.
The next Monday, March 9, 1992 we went to see the neurologist. I was completely unable to dress that day. D had to help with each step of the process.
We arrived at CMC and checked in. They took us back to the exam room. I sat in the corner, barely able to move, talking took so much effort that I left it to D to explain why we were there. The doctor asked us to get him out of the carrier for an examination and D got up to do so. I got a judgmental look from both the nurse and the neurologist. They had no idea I was as sick as I was, they thought I just was on disconnect.
He talked to us about the seizure and explained that it hadn’t been epilepsy. It had been because his throwing up (which B decided that since he’d demonstrated for everyone else, he might as well demonstrate for the neuro as well) had been so severe he’d not gotten enough oxygen and that is what caused the seizure. Having been a child that would hold my breath till I passed out and then had a seizure, I was familiar with the process.
He was concerned that his muscle tone was poor. That he’d not developed past the new born stage at all. While the seizure did not concern him, much else did. He wanted us to return in 3 weeks. He gave us some exercises to do with him.
The next morning, I woke up, D got B out of his crib and we both headed to the living room. D was going to change him and then give him to me to feed.
We have a few pictures of this, my feeding him. I did not hold the bottle. I held him and was unable to hold the 4 oz bottle. My coordination was gone and it took way too much strength to keep my hand in place. Someone would place him in my arms, and put the bottle in his mouth, prop it with a cloth diaper. I would hold him a little ways out, if I cuddled him close, he’d stiffen up and refuse to eat.
There is little that has ever caused me to feel like a complete and utter failure except my son refusing to allow me to hold him close. I did not know it at the time, but that was an important clue as to what was facing us.
Holding him toward the end of my knees one hand under him, the other holding his foot and a cloth diaper to hold the bottle. Hoping that we’d time things right to get the bottle out of his mouth and him sitting before he threw up was quite the battle.
D was changing him while I went to the bathroom. I came out and turned to sit down. I could no longer sit, but rather braced my legs against the couch (or chair) and dropped. D was changing B on the floor where I’d be sitting on the couch. As I turned, I felt my legs collapse. My arms went between me and I landed in an arch over my son.
I wrenched my shoulder, but my son was ok. I’d arched enough in the fall to protect him.
This shook me to my core. I could have seriously injured my son. We’d planned on taking my mom out to eat to thank her for her assistance with S during the end of the pregnancy and hospitalizations. We kept thinking I’d feel better tomorrow. We decided that nothing was changing, so we’d take her out.
That night, I went to leave the house to go to dinner with my family and My legs would not allow me to step down that first step. My mom and D decided to help me by getting the couch cushions for me to drop down on. They guided my fall, then helped me to butt scoot down the stairs. They both helped me up, loaded me and the kids into the car and off to dinner we went.
We came back to my house and I was unable to move my leg to get up to the stairs. Between my wrenched shoulder and that, D and Mom decided it would be best for me to go to the ER. I did.
A doctor we’d seen several times with S was there. He examined me and was visibly worried. He told D that he’s been watching me decline over the last 2 ½ years and we need to find out what was wrong. He was going to admit me.
He called the Medical School and they said “she has an appt send her home”. He then said “I’m admitting your patient, get your doctors down here.” I had no idea at the time, but Dr. R probably saved my life.
A resident came down and examined me. He said he thought he knew what was going on, but wanted another opinion. He called another resident down and would not talk to him he wanted a non biased thought. So, the second resident examined me. When he was done the first came over and they looked at each other and without blinking both said, simultaneously, “Myasthenia Gravis”
Marching on
B was admitted around 2 pm on New Years Eve, a bad time for an admission. We had no idea what was going to happen, no real understanding of failure to thrive. We’d been told he would be there till he regained to his 9 pounds 8.5 oz birth weight. When a child is admitted to the hospital under failure to thrive, the parents cannot feed the child. I’d been warned, and it was explained that the doctors did not suspect me, but it was policy. I don’t remember if it was hospital policy or state law. The nurses said that normally, a parent is asked to leave the room, but the doctor had said I could stay close, and stroke his arm or head.
He had an IV attached to his head with many apologies to me for not putting it elsewhere. I tried to assure the IV nurse that I was familiar with babies on IV’s and understood that as bad as it looks, it’s a safer place.
Between the allowances and his size, they were a bit confused on failure to thrive. Almost 8 pound babies aren’t normally failure to thrive. As the nurse finished the first feeing, she was removing the bottle from his mouth and he proceeded to projectile vomit before the nipple was gone. Like the plug had been removed and the gusher flowed. The nurse, a bit annoyed (um, I’d told her that was what happened!) handed him back to me and went and changed.
When it came time for the next feeding, another nurse came in, with a few towels. She’d been warned. She fed him, we talked, I stroked. As she removed the bottle, she was covered, the towels were not sufficient.
A nurse came in the middle of the night, and the same thing happened.
The next morning a nurse brought me the bottle to feed him. I was still too weak to pick him up, so it required her helping me to get settled. I fed him and a nurse came in to help get him settled off the bottle, and knowing what would happen, she came prepared. B was scheduled for tests that day.
There was a distinct difference in the way the nurses were treating me. I can remember thinking how odd it was, when they thought I was doing something to my child, they were rude. When they knew I was doing none of it, they were kind, compassionate, even a bit sad.
I can’t help but wonder, doesn’t the mother who *is* doing something need that compassion for someone to reach beyond their pain to get to the reason why they are in pain so they don’t inflict pain on their child?
I don’t remember the order the tests were done, or even all the tests, what I do remember was a constant stream of technicians coming to get my newborn. Sometimes they’d let me come, other times not.
EEG, Upper GI, Barium Swallow, Swallowing study, and who knows what else.
Eight days later we left with a referral to an orthopedist (his legs were, in the doctor’s words, “wonky”) and a Pediatric Gastroenterologist and dermatologist for the rash that was everywhere. The next day we went to Dr. D’s. The GI doctor. He’d only gotten up to 8 pounds 14 oz, but the family doctor felt he was moving in the right direction.
B decided to baptize him as well. It helped, the doctor said he didn’t need my description of what was going on. What bothered me was that it was the first time he’d done that when feeding had been just at a random time. It would not be the last.
Dr. D changed his formula to a ‘pre digested’ soy formula (smelt like burnt broccoli) and added reglan.
Several days later he called to find out how things were going. When he called, D was cleaning up from one of his projectile vomiting episodes.
I was beside myself. This beautiful baby had already been through so much! What was really getting to me was his lack of cry. “eh eh eh eh” was as much as we got. His eyes had still not opened beyond slits and I was angry. Children don’t have eyes opening issues like dogs! My baby couldn’t open his eyes! He couldn’t cry, he couldn’t keep food down.
The eyes were such a big issue that on the rare event he did get them slightly open, my toddler would declare “Hiz eyez open Hiz eyez open!”
We went to see the pediatric orthopedist as the family doctor had wanted. He became annoyed with me saying “there is nothing wrong with this child but an over reactive mother! Stop fussing over him. His legs are fine, he’s perfectly healthy. Live your life!”
B responded to the doctors anger by throwing up on him.
We called the GI doctor to say nothing had changed. He changed the formula again.
By now, he was 6 weeks old. We got up the morning he turned 6 weeks and his eyes were WIDE open. Looking around at this world he’d not seen before he awarded us with more projectile vomiting.
We had a follow up with both the family doc and the GI doc that day. Neither were happy with his lack of development. The GI doc changed his formula ..again.
Two weeks later, B finished feeding, threw up, then his eyes rolled back in his head and he went limp as a wet noodle. There he was, in my arms, with zero tone and not really ‘there’. We called the GI doc (because it happened while throwing up) and the GI doc said in the morning he’d make a referral to the pediatric neurologist. What had just happened was a seizure.
He had an IV attached to his head with many apologies to me for not putting it elsewhere. I tried to assure the IV nurse that I was familiar with babies on IV’s and understood that as bad as it looks, it’s a safer place.
Between the allowances and his size, they were a bit confused on failure to thrive. Almost 8 pound babies aren’t normally failure to thrive. As the nurse finished the first feeing, she was removing the bottle from his mouth and he proceeded to projectile vomit before the nipple was gone. Like the plug had been removed and the gusher flowed. The nurse, a bit annoyed (um, I’d told her that was what happened!) handed him back to me and went and changed.
When it came time for the next feeding, another nurse came in, with a few towels. She’d been warned. She fed him, we talked, I stroked. As she removed the bottle, she was covered, the towels were not sufficient.
A nurse came in the middle of the night, and the same thing happened.
The next morning a nurse brought me the bottle to feed him. I was still too weak to pick him up, so it required her helping me to get settled. I fed him and a nurse came in to help get him settled off the bottle, and knowing what would happen, she came prepared. B was scheduled for tests that day.
There was a distinct difference in the way the nurses were treating me. I can remember thinking how odd it was, when they thought I was doing something to my child, they were rude. When they knew I was doing none of it, they were kind, compassionate, even a bit sad.
I can’t help but wonder, doesn’t the mother who *is* doing something need that compassion for someone to reach beyond their pain to get to the reason why they are in pain so they don’t inflict pain on their child?
I don’t remember the order the tests were done, or even all the tests, what I do remember was a constant stream of technicians coming to get my newborn. Sometimes they’d let me come, other times not.
EEG, Upper GI, Barium Swallow, Swallowing study, and who knows what else.
Eight days later we left with a referral to an orthopedist (his legs were, in the doctor’s words, “wonky”) and a Pediatric Gastroenterologist and dermatologist for the rash that was everywhere. The next day we went to Dr. D’s. The GI doctor. He’d only gotten up to 8 pounds 14 oz, but the family doctor felt he was moving in the right direction.
B decided to baptize him as well. It helped, the doctor said he didn’t need my description of what was going on. What bothered me was that it was the first time he’d done that when feeding had been just at a random time. It would not be the last.
Dr. D changed his formula to a ‘pre digested’ soy formula (smelt like burnt broccoli) and added reglan.
Several days later he called to find out how things were going. When he called, D was cleaning up from one of his projectile vomiting episodes.
I was beside myself. This beautiful baby had already been through so much! What was really getting to me was his lack of cry. “eh eh eh eh” was as much as we got. His eyes had still not opened beyond slits and I was angry. Children don’t have eyes opening issues like dogs! My baby couldn’t open his eyes! He couldn’t cry, he couldn’t keep food down.
The eyes were such a big issue that on the rare event he did get them slightly open, my toddler would declare “Hiz eyez open Hiz eyez open!”
We went to see the pediatric orthopedist as the family doctor had wanted. He became annoyed with me saying “there is nothing wrong with this child but an over reactive mother! Stop fussing over him. His legs are fine, he’s perfectly healthy. Live your life!”
B responded to the doctors anger by throwing up on him.
We called the GI doctor to say nothing had changed. He changed the formula again.
By now, he was 6 weeks old. We got up the morning he turned 6 weeks and his eyes were WIDE open. Looking around at this world he’d not seen before he awarded us with more projectile vomiting.
We had a follow up with both the family doc and the GI doc that day. Neither were happy with his lack of development. The GI doc changed his formula ..again.
Two weeks later, B finished feeding, threw up, then his eyes rolled back in his head and he went limp as a wet noodle. There he was, in my arms, with zero tone and not really ‘there’. We called the GI doc (because it happened while throwing up) and the GI doc said in the morning he’d make a referral to the pediatric neurologist. What had just happened was a seizure.
Friday, August 6, 2010
The last 2 weeks of 1991
We woke up at 6 am on Wednesday, December 18, 1991 ready to go to the doctor. I had to be there at 7. I, again, could not step into the shower, so D had to help me in and out as well as getting dressed.
We left at 6:40 to go pick up a childhood friend who lived her. SN and I met in the second grade. She was also an OB nurse. Having someone like that in your labor room is highly recommended!
We got to the hospital, they said I was already having contractions but I was not aware of them. They started the pitocin as planned. My fears intensified. What was going to happen to me in labor? I was so tired would I be able to do this? I needed help getting dressed and brushing my teeth! How was a baby going to be pushed out. I kept my fears to myself because it was ‘only chronic fatigue syndrome’.
As the labor started something odd happened. My vision cleared up, my breathing deepened, my ability to move positions in the bed, get up to go to the bathroom improved as the minutes went by. I started to become ecstatic. Whatever happened in the first labor was going away with the second. My journey into inability was over!
Around 11, D became restless and decided to go home to clean house. Leaving me in labor with SN. I was less than amused! But, SN and I had a blast. She read to me, she wiped my forehead, offered me ice chips .. it was strange, she never offered me something that I did not need when I needed it. Her instincts for what was needed then were right on. I’m guessing the combination of a 20 year friendship and her training as an OB nurse was what made her so perfect.
Things started to get intense and we called D to tell him to get up there. He walked in and was white as a ghost. I asked him what was wrong and he said that he’d gone to throw the phone books away and not let go. The trashcans were beside our porch. The porch railing was 8 feet from the ground. He, and his 98 pound frame, leaned over to throw the 3 phone books away and just didn’t let go. Gravity took over and pulled him head first into the trashcan. He caught his neck/shoulder on the side of the medal trashcan.
I got a clear visual of what happened and busted up laughing. (As did SN) He was obviously in a lot of pain, but I was somewhat miffed that he’d left me in labor to begin with so my compassion was non existent. (18 years later it still is!)
His sister came to see us. She worked in the hospital. If she’d come, that’d have been fine, but it wasn’t just her. I’m IN labor with my legs up and 4 of her co workers come walking in. D was sitting on the couch between contractions, but during a contraction he’d get up to hold my hand. I had 3 contractions while she was there and she stood between me and D the whole time insisting (during a contraction) that he get down to the ER. I became angry. He was not leaving me again. Another contraction started, I started to whine for D to come and she turned around and yelled at me “Would you please let me finish my conversation with my injured brother?”
The nurse made them leave at that point. Told D that he might need to go to the ER when we were done, but for now, regardless of what he was going through, I needed him.
The weakness was now a distant memory. The contractions didn’t matter because I had all the strength I’d had before I got ill. It was the first time I’d felt normal in 2 years 2 months and 4 days!!
The nurse gets the doctor into the room and he said that it was time. 20 minutes later B made his way into the world. 8:11 PM. He had a large head, and an incredibly weak cry. He could not open his eyes and he seemed lethargic. His apgar scores were less than comfortable.
After they let me hold him, they wanted to take him to the NICU to see what was wrong. While they took him, I got up to go to the bathroom. I was thrilled with these legs working so well. While I was in the bathroom my sister and brother in law came by. I came out of the bathroom said “hi!” and suddenly my entire body turned to mush. My sister yelled “she’s not ok!” and I collapsed to the floor. The weakness returned with a vengeance. I couldn’t catch my breath. The nurse and my brother in law helped me to my bed and put some oxygen on me.
A short time later I was transferred to my room. They’d brought me back B. Unsure of what was going on, but nothing seemed urgent.
Our Family doc came into see him. He started to exam B and his eyes filled with tears. He told us that something wasn’t right and we’d find out what it was. He said to let him worry about it, our job was to love this child.
The next morning a doctor from the clinic came in. B was not ready to be discharged, but she was determined to discharge me, less than 11 hours after he’d been born. The nurse flat out refused to fill out the discharge paper work and demanded an attending come and look at me. She advocated elegantly for me.
The doctor that tried to discharge me was told that she was off the case and another doctor assigned. She came storming into my room saying I had no right to get her into trouble. All I had was chronic fatigue syndrome and I needed to stop making up symptoms. She was yelling loudly enough that the family doctor heard her from the nurses station and came in to remove her. He apologized to me, so did the attending and the nurses and an administrator from the hospital.
My weakness was as bad as ever. I was unable to pick up my son and nursing was a nightmare. I had to call the nurse back into the room in order to change sides. I was unable to maneuver him from one breast to another. I was unable to dress or change him. I was also unable to get the spoon from my plate to my mouth. I was embarrassed to tell anyone about this.
It was finals week and my husband had to travel to his school daily 90 minutes away to take his finals. When he got back into town, I let him feed me.
We were discharged Saturday morning. We did not know what the future would hold.
Tuesday, we got up. Nothing had improved. A neighbor came over and we opened the door for her. The light hit B and she gasped. He was YELLOW! Her son had been jaundiced and it alarmed her. I called the doctor and told the receptionist that he was yellow, dark yellow all over, palms, feet and eyes. She told the doctor that “Mom thinks baby might be a little jaundiced” It was Christmas eve and they sent us to hospital lab to draw labs. The lab tech called her supervisor because she’d never done an outpatient lab on a baby *this* yellow. They drew the labs and asked for them stat ..but they did not get to the doctor before he left for Christmas.
Christmas day we woke up and before we could even register we were awake. S was crying. Another 105 fever .. off to the ER before breakfast, before gifts. Another ear infection.
The next day we got both boys ready to go see the doctor. When he’d gotten the ER report on S and realized we were coming in, they called and asked for both of them.
We get there, the nurse seemed a bit nervous after seeing B. She asked how things were going. I was unsure, B had a rash over his entire body. I’d stopped breast feeding on Monday because every time he started to nurse, it was like this wave came over me, increasing my weakness. It would last about 2 hours, just in time for nursing. The jaundice concerned me a bit.
The doctor came in and was visibly shaken. B’s bilirubin was off the charts. Dangerous levels. He told me that I should have explained that his eyes were effected and that he was DARK yellow. I told him my exact words to the receptionist. He wasn’t thrilled. He said that had he known, he’d admitted B for light therapy.
They re drew the bilirubin and we waited. It was down to an 18 so he felt it was ok for us to go home. But with his lack of crying, weight loss (instead of gaining to birth weight of 9 lbs 8 oz, he was now lbs. 1 oz and fitting in the newborn clothes that had been too small at birth) he wanted to see him again. We talked about his projectile vomiting and the doctor picked him up and B decided to show him what I’d meant. The doctor told B that he’d believed me, trusted me and did not need the example, but thanks anyway.
We brought him back the next Tuesday, New Years Eve, and the doctor looked very sad. He said that B needed to go into the hospital, his weight was down again, to 7 lbs 12 oz. He admitted him under failure to thrive”
As we left his office for the hospital he took B from me, and looked him right in the eye and said “please tell me you’re not going to be sickly like your brother.”
We left at 6:40 to go pick up a childhood friend who lived her. SN and I met in the second grade. She was also an OB nurse. Having someone like that in your labor room is highly recommended!
We got to the hospital, they said I was already having contractions but I was not aware of them. They started the pitocin as planned. My fears intensified. What was going to happen to me in labor? I was so tired would I be able to do this? I needed help getting dressed and brushing my teeth! How was a baby going to be pushed out. I kept my fears to myself because it was ‘only chronic fatigue syndrome’.
As the labor started something odd happened. My vision cleared up, my breathing deepened, my ability to move positions in the bed, get up to go to the bathroom improved as the minutes went by. I started to become ecstatic. Whatever happened in the first labor was going away with the second. My journey into inability was over!
Around 11, D became restless and decided to go home to clean house. Leaving me in labor with SN. I was less than amused! But, SN and I had a blast. She read to me, she wiped my forehead, offered me ice chips .. it was strange, she never offered me something that I did not need when I needed it. Her instincts for what was needed then were right on. I’m guessing the combination of a 20 year friendship and her training as an OB nurse was what made her so perfect.
Things started to get intense and we called D to tell him to get up there. He walked in and was white as a ghost. I asked him what was wrong and he said that he’d gone to throw the phone books away and not let go. The trashcans were beside our porch. The porch railing was 8 feet from the ground. He, and his 98 pound frame, leaned over to throw the 3 phone books away and just didn’t let go. Gravity took over and pulled him head first into the trashcan. He caught his neck/shoulder on the side of the medal trashcan.
I got a clear visual of what happened and busted up laughing. (As did SN) He was obviously in a lot of pain, but I was somewhat miffed that he’d left me in labor to begin with so my compassion was non existent. (18 years later it still is!)
His sister came to see us. She worked in the hospital. If she’d come, that’d have been fine, but it wasn’t just her. I’m IN labor with my legs up and 4 of her co workers come walking in. D was sitting on the couch between contractions, but during a contraction he’d get up to hold my hand. I had 3 contractions while she was there and she stood between me and D the whole time insisting (during a contraction) that he get down to the ER. I became angry. He was not leaving me again. Another contraction started, I started to whine for D to come and she turned around and yelled at me “Would you please let me finish my conversation with my injured brother?”
The nurse made them leave at that point. Told D that he might need to go to the ER when we were done, but for now, regardless of what he was going through, I needed him.
The weakness was now a distant memory. The contractions didn’t matter because I had all the strength I’d had before I got ill. It was the first time I’d felt normal in 2 years 2 months and 4 days!!
The nurse gets the doctor into the room and he said that it was time. 20 minutes later B made his way into the world. 8:11 PM. He had a large head, and an incredibly weak cry. He could not open his eyes and he seemed lethargic. His apgar scores were less than comfortable.
After they let me hold him, they wanted to take him to the NICU to see what was wrong. While they took him, I got up to go to the bathroom. I was thrilled with these legs working so well. While I was in the bathroom my sister and brother in law came by. I came out of the bathroom said “hi!” and suddenly my entire body turned to mush. My sister yelled “she’s not ok!” and I collapsed to the floor. The weakness returned with a vengeance. I couldn’t catch my breath. The nurse and my brother in law helped me to my bed and put some oxygen on me.
A short time later I was transferred to my room. They’d brought me back B. Unsure of what was going on, but nothing seemed urgent.
Our Family doc came into see him. He started to exam B and his eyes filled with tears. He told us that something wasn’t right and we’d find out what it was. He said to let him worry about it, our job was to love this child.
The next morning a doctor from the clinic came in. B was not ready to be discharged, but she was determined to discharge me, less than 11 hours after he’d been born. The nurse flat out refused to fill out the discharge paper work and demanded an attending come and look at me. She advocated elegantly for me.
The doctor that tried to discharge me was told that she was off the case and another doctor assigned. She came storming into my room saying I had no right to get her into trouble. All I had was chronic fatigue syndrome and I needed to stop making up symptoms. She was yelling loudly enough that the family doctor heard her from the nurses station and came in to remove her. He apologized to me, so did the attending and the nurses and an administrator from the hospital.
My weakness was as bad as ever. I was unable to pick up my son and nursing was a nightmare. I had to call the nurse back into the room in order to change sides. I was unable to maneuver him from one breast to another. I was unable to dress or change him. I was also unable to get the spoon from my plate to my mouth. I was embarrassed to tell anyone about this.
It was finals week and my husband had to travel to his school daily 90 minutes away to take his finals. When he got back into town, I let him feed me.
We were discharged Saturday morning. We did not know what the future would hold.
Tuesday, we got up. Nothing had improved. A neighbor came over and we opened the door for her. The light hit B and she gasped. He was YELLOW! Her son had been jaundiced and it alarmed her. I called the doctor and told the receptionist that he was yellow, dark yellow all over, palms, feet and eyes. She told the doctor that “Mom thinks baby might be a little jaundiced” It was Christmas eve and they sent us to hospital lab to draw labs. The lab tech called her supervisor because she’d never done an outpatient lab on a baby *this* yellow. They drew the labs and asked for them stat ..but they did not get to the doctor before he left for Christmas.
Christmas day we woke up and before we could even register we were awake. S was crying. Another 105 fever .. off to the ER before breakfast, before gifts. Another ear infection.
The next day we got both boys ready to go see the doctor. When he’d gotten the ER report on S and realized we were coming in, they called and asked for both of them.
We get there, the nurse seemed a bit nervous after seeing B. She asked how things were going. I was unsure, B had a rash over his entire body. I’d stopped breast feeding on Monday because every time he started to nurse, it was like this wave came over me, increasing my weakness. It would last about 2 hours, just in time for nursing. The jaundice concerned me a bit.
The doctor came in and was visibly shaken. B’s bilirubin was off the charts. Dangerous levels. He told me that I should have explained that his eyes were effected and that he was DARK yellow. I told him my exact words to the receptionist. He wasn’t thrilled. He said that had he known, he’d admitted B for light therapy.
They re drew the bilirubin and we waited. It was down to an 18 so he felt it was ok for us to go home. But with his lack of crying, weight loss (instead of gaining to birth weight of 9 lbs 8 oz, he was now lbs. 1 oz and fitting in the newborn clothes that had been too small at birth) he wanted to see him again. We talked about his projectile vomiting and the doctor picked him up and B decided to show him what I’d meant. The doctor told B that he’d believed me, trusted me and did not need the example, but thanks anyway.
We brought him back the next Tuesday, New Years Eve, and the doctor looked very sad. He said that B needed to go into the hospital, his weight was down again, to 7 lbs 12 oz. He admitted him under failure to thrive”
As we left his office for the hospital he took B from me, and looked him right in the eye and said “please tell me you’re not going to be sickly like your brother.”
1991
Christmas Day brought another high fever and another ER visit. More antibiotics and this time, a nebulizer. S continued to develop quickly. He showed an early sense of humor, smart, funny and coordinated.
In Febrary, I experienced one of the most humiliating experiences of my life. I went to the family doctor to get a diaphragm. It seemed to make the most sense for birth control. With a sick baby and not feeling well myself, the idea of another child was truly frightening.
I went to the doctor and he went to fit me for a diaphragm. He fitted me, then had me show that I could actually get it into place. I had a hard time squeezing it, having no idea that it was muscle weakness that made it impossible. For 30 minutes I struggled to insert it properly and finally, the doctor decided that if it was this much trouble, it was not appropriate.
He talked to me about going to a new doctor, a different doctor to see what was wrong. I dismissed it. I was just ‘depressed’.
He prescribed me birth control pills, reluctantly. Not knowing what was wrong, introducing hormones to the mix was not his idea of good medicine. But weighing that with no birth control, it seemed the better option.
In March, S got strep throat and ear infections. Another night in the ER with IV antibiotics, and exhaustion like I’d not known before set in. A few days later I took my very sore throat to the doctor. I had strep as well.
I told him that for the last month, my fatigued had multiplied. Getting through S’s ER visit was next to impossible. Taking care of him after that, was a true feat. There were days that I literally could not step into the shower.
I was having more trouble chewing, frequently choking, my jaw did not seem to want to stay in place. He sent me to an ENT to see what he thought about a disorder where the jaw instead of being too tight, was too loose. The ENT said it was definitely Lax TMJ, probably because all my joints were loose. (a problem from birth). He prescribed valium ..which is often used with TMJ. I still don’t know why it was given for LAX TMJ.
I got significantly weaker, struggling to change my sons clothing, lifting him into the high chair was next to impossible, but most of the time he could climb up himself.
In April, I received a phone call from a dear friend, my ex sister in law V. She was crying. Her ex husband had died in a motor cycle accident. V & G had been very close with my ex, R, and I. V and I had maintained a friendship after my divorce. G had moved away, and come back. He was the father of her son and had finally taken responsibility. He was also a neighbor of mine and our friendship had renewed.
I went to his funeral thinking “I’ll be ok as long as I can’t see R or V” The usher sat me right behind them. Which V told me later was a huge comfort to her, to have R and I so close to her. I was fine, till I saw R trembling from crying, then I started which started V crying. After the funeral, V, R and V’s husband and I went out for lunch. We talked about our lives and where we were. R told me he was very concerned because I did not look like me.
I got queezy while sitting in the resteraunt and V joked that I was pregnant. I denied it, then as I was driving home thought … hmmmmmmm . I stopped and bought a pregnancy test. It was positive! I was terribly heart broken. I held S like I’d never been allowed to touch him. It seemed to me like I’d had this child to myself for far too short a time.
My fears of health and another childs health took the back seat. I adjusted to the pregnancy, emotionally, but not physically. I continued to degenerate almost weekly. I could see the concern in my doctors eyes every time I went to see him. Even when I wasn’t the patient. I found out recently, that that period of time was the scariest he’d had as a doctor. He felt I was dying in front of him and there was nothing that he could do. Anything he could think of that could be wrong, had been ruled out. He was at an utter loss.
He referred me to the medical school to handle the high risk pregnancy. Not knowing what was wrong left him unwilling to handle the pregnancy. But he did agree to come see the baby in the hospital and not wait for the 6 weeks that he normally does. (the medical school normally handled the pregnancy and the post natal period before the family went to the pediatrician or family doc). He could arrange it because he was on staff.
I went to the clinic and they tested me for thyroid disorder. When my thyroid tests came back normal, they diagnosed me as having Chronic Fatigue Syndrome. My primary care doctor said he didn’t think so, but he had no other suggestions either.
Samuel continued to get sick, frequently. ER’s were a normal part of our life .. Easter, Memorial Day and 4th of July. This child had a penchant for getting sick on a holiday! (He would be 5 years old before we did not spend a holiday in the hospital .. )
I went through the first trimester, unable to eat anything more substantial than scrambled eggs. The second trimester was better but when the third came, my fatigue multiplied. I began needing daily assistance to get dressed. I was no longer able to drive, my blood pressure was constantly low. Very low. 90/55 was a normal reading for me. That left no place for it to drop without me fainting.
The Thursday appointment before B was born they did an ultrasound. His size was a concern and they felt if they waited to deliver, he’d be so big they’d be required to do a C Section. So they said to come back Monday to check his size. The receptionist said “Now when you come on Monday, make sure you tell them you’re not one of the high risk patients.” Rather alarmed, my only reason for BEING there was because of High Risk! I called my primary care doctor who was livid. He’d specifically made the referral based on my unknown health problems
Monday came and I started to get into the shower. My legs started to collapse under me. I fell to the side and hit my ribs on the toilet. My knees hit the seat. Thankfully, my pregnant belly did not jam into any part of the toilet.
I sat for an hour before I was able to get up to go call anyone. I called the clinic telling them what happened. I called the clinic and told them what happened. They said “so you want to cancel. You should have given us more notice, but come in tomorrow at 10. “
When I got there at 10, I checked in. I was having trouble breathing. I’d cracked a rib while falling into the toilet. B’s estimated weight was well over 9 pounds so they scheduled me for an induction the next day.
In Febrary, I experienced one of the most humiliating experiences of my life. I went to the family doctor to get a diaphragm. It seemed to make the most sense for birth control. With a sick baby and not feeling well myself, the idea of another child was truly frightening.
I went to the doctor and he went to fit me for a diaphragm. He fitted me, then had me show that I could actually get it into place. I had a hard time squeezing it, having no idea that it was muscle weakness that made it impossible. For 30 minutes I struggled to insert it properly and finally, the doctor decided that if it was this much trouble, it was not appropriate.
He talked to me about going to a new doctor, a different doctor to see what was wrong. I dismissed it. I was just ‘depressed’.
He prescribed me birth control pills, reluctantly. Not knowing what was wrong, introducing hormones to the mix was not his idea of good medicine. But weighing that with no birth control, it seemed the better option.
In March, S got strep throat and ear infections. Another night in the ER with IV antibiotics, and exhaustion like I’d not known before set in. A few days later I took my very sore throat to the doctor. I had strep as well.
I told him that for the last month, my fatigued had multiplied. Getting through S’s ER visit was next to impossible. Taking care of him after that, was a true feat. There were days that I literally could not step into the shower.
I was having more trouble chewing, frequently choking, my jaw did not seem to want to stay in place. He sent me to an ENT to see what he thought about a disorder where the jaw instead of being too tight, was too loose. The ENT said it was definitely Lax TMJ, probably because all my joints were loose. (a problem from birth). He prescribed valium ..which is often used with TMJ. I still don’t know why it was given for LAX TMJ.
I got significantly weaker, struggling to change my sons clothing, lifting him into the high chair was next to impossible, but most of the time he could climb up himself.
In April, I received a phone call from a dear friend, my ex sister in law V. She was crying. Her ex husband had died in a motor cycle accident. V & G had been very close with my ex, R, and I. V and I had maintained a friendship after my divorce. G had moved away, and come back. He was the father of her son and had finally taken responsibility. He was also a neighbor of mine and our friendship had renewed.
I went to his funeral thinking “I’ll be ok as long as I can’t see R or V” The usher sat me right behind them. Which V told me later was a huge comfort to her, to have R and I so close to her. I was fine, till I saw R trembling from crying, then I started which started V crying. After the funeral, V, R and V’s husband and I went out for lunch. We talked about our lives and where we were. R told me he was very concerned because I did not look like me.
I got queezy while sitting in the resteraunt and V joked that I was pregnant. I denied it, then as I was driving home thought … hmmmmmmm . I stopped and bought a pregnancy test. It was positive! I was terribly heart broken. I held S like I’d never been allowed to touch him. It seemed to me like I’d had this child to myself for far too short a time.
My fears of health and another childs health took the back seat. I adjusted to the pregnancy, emotionally, but not physically. I continued to degenerate almost weekly. I could see the concern in my doctors eyes every time I went to see him. Even when I wasn’t the patient. I found out recently, that that period of time was the scariest he’d had as a doctor. He felt I was dying in front of him and there was nothing that he could do. Anything he could think of that could be wrong, had been ruled out. He was at an utter loss.
He referred me to the medical school to handle the high risk pregnancy. Not knowing what was wrong left him unwilling to handle the pregnancy. But he did agree to come see the baby in the hospital and not wait for the 6 weeks that he normally does. (the medical school normally handled the pregnancy and the post natal period before the family went to the pediatrician or family doc). He could arrange it because he was on staff.
I went to the clinic and they tested me for thyroid disorder. When my thyroid tests came back normal, they diagnosed me as having Chronic Fatigue Syndrome. My primary care doctor said he didn’t think so, but he had no other suggestions either.
Samuel continued to get sick, frequently. ER’s were a normal part of our life .. Easter, Memorial Day and 4th of July. This child had a penchant for getting sick on a holiday! (He would be 5 years old before we did not spend a holiday in the hospital .. )
I went through the first trimester, unable to eat anything more substantial than scrambled eggs. The second trimester was better but when the third came, my fatigue multiplied. I began needing daily assistance to get dressed. I was no longer able to drive, my blood pressure was constantly low. Very low. 90/55 was a normal reading for me. That left no place for it to drop without me fainting.
The Thursday appointment before B was born they did an ultrasound. His size was a concern and they felt if they waited to deliver, he’d be so big they’d be required to do a C Section. So they said to come back Monday to check his size. The receptionist said “Now when you come on Monday, make sure you tell them you’re not one of the high risk patients.” Rather alarmed, my only reason for BEING there was because of High Risk! I called my primary care doctor who was livid. He’d specifically made the referral based on my unknown health problems
Monday came and I started to get into the shower. My legs started to collapse under me. I fell to the side and hit my ribs on the toilet. My knees hit the seat. Thankfully, my pregnant belly did not jam into any part of the toilet.
I sat for an hour before I was able to get up to go call anyone. I called the clinic telling them what happened. I called the clinic and told them what happened. They said “so you want to cancel. You should have given us more notice, but come in tomorrow at 10. “
When I got there at 10, I checked in. I was having trouble breathing. I’d cracked a rib while falling into the toilet. B’s estimated weight was well over 9 pounds so they scheduled me for an induction the next day.
Thursday, August 5, 2010
The Rest of the First Year
Christmas Day, we woke up ready for our first Christmas as a family. S was decked out in his puppy dog romper, my mom came over and D cooked a wonderful dinner. S was tired and worn out before dinner so I put him down. He was only 2 months old and there had been much commotion. My very pregnant sister and her 4 year old had come over and S was just worn out. During dinner he started to scream. I jumped up and went to him. He was burning up. I called my sister to help me undress him, change him and take his temp. 103.6. Our first Christmas would be spent in the same place as the first Thanksgiving … in the hospital emergency room. Ear infections and bronchitis. More antibiotics and this time some breathing treatments to ensure that there was no furthering of the lung issues.
I chose to go back to school, against my family’s wishes but I really thought getting out would help. I took 2 classes, an evening meteorology class and a day time humanities 2. I struggled with both, there were days that to get to class I had to stop 5 or 6 times on the way. My mom had decided meteorology sounded fun and took it with me. Having her to read me the text and drive me to and from class probably were the only thing that got me through it.
By February, my symptoms were not getting better. The doctor referred me to a neurologist. I went and saw her, she took a complete history.
She asked about symptoms, family situation, history .. and then told me that she felt there was nothing wrong, but she would run the tests to make sure.
She said that I needed attention, and evidently, this was the only way I knew how to go about it. I asked her what made her say that. She said “Because you have every symptom I asked you about, you even had pain on your face when I pressed on the cheeks.” (years later, I’d finally get referred to ENT to evaluate for sinus surgery. He said that it was a chronic sinus infection …probably there from my pre teen days …gee, and it’s amazing I had pain on my face?)
She ordered the tests, only to find out that since I was on Medicaid, they did not cover outpatient testing. So she told me to go home and be a parent.
In late March, swallowing became nearly impossible. I choked and choked. I wound up severely dehydrated and my primary doc admitted me for fluids. He called the neuro and said I was ill and in the hospital. Come do the tests. She came in, annoyed that she’d been called back in but agreeing to do the testing.
She did an EMG, blood work, EEG, CT scan, MRI … and full evoked potentials and then dismissed me. The nurses were confused because a test involving an IV had been ordered, but not done.
She informed me that all the tests were 100% normal and that there was absolutely nothing wrong with me, just as she’d suspected. She slammed my chart shut and walked toward the door. As she reached for the door knob, I said “if stress and depression is making my body feel like this, behave like this, should I see a psychiatrist”
Her response still rings in my ears
“No, you need to stop being a baby about being a new mother.”
I went back to my primary care doctor, scared, worried, worn out and weak. The thing was … I wanted her to be right! I wanted it to be all in my head. I did not want something seriously wrong with me! I didn’t even want something moderately severe with me!
My primary doc got the letter from her saying that she’d ran all those tests and they’d been normal. He did state that most specialists doing this amount of tests give him more than just their eval, but copies too, but a few specialists only give their interpretations. Because of that, he’d like me to see someone else. I refused. I just needed to grin and bear it.
Maybe I was trying too hard to get attention. Maybe having a sick child was making me crazy?
In April, S got pneumonia bad enough to be hospitalized again. It started with a typical URI .. then the fever went out of control. Found in the doctor’s office, quickly responded to antibiotics, but 2 days after the last dose, we found ourselves at 5 am in the ER with a baby who had 105 fever. It would not be the last time we saw 105.
They gave IV antibiotics and sent us home. As had happened before, an infection was making its rounds around pediatrics and they felt he’d be better off at home. We took him home and around 10 am, he was sitting, rather joyfully, in his walker. He rolled over and SQUEALED with glee. He’d been chewing on a white cloth diaper. I looked and that diaper was covered in blood. Before I could react, I realized I was seeing the very tip of a tooth. *whew!* why didn’t anyone tell me that gums bleed when that tooth breaks through! I might not have noticed had he not been chewing on white. I might not have panicked like I did, had we not spent the night in the ER.
2 days after his antibiotics were done, his fever was high again. Another call to the doctor who said there was only 2 kids in pediatrics, and neither had anything contagious, we were going to admit him for long term IV antibiotics. This time, he had pneumonia, again. We stayed for 8 days … I only sort of remember it.
The day after he got out of the hospital, I was at school and participated in a student health survey. They did several tests including blood sugar. Mine was elevated, they called it diabetes, but I found out later that it was in the pre diabetes range.
I went on a diabetic diet, and felt better. My primary care doctor and I both thought maybe the weakness and fatigue had been a blood sugar issue.
S was dedicated at church with 17 other babies. 2 of them, friends of ours. After church that day we went for a Barbecue with some of the other families who’d participated in the dedication. All was fine, and we stayed late into the evening. The babies had all fallen asleep in play pens in various rooms in the house. We were playing a game of some sorts when S started to cry. I went to check on him and he was burning up. My friend helped me to take his temperature, trying to comfort him. He had 104 fever so back to the ER we went. Ear infection. Again.
In early May S was sent to a Pulmonologist for his frequent lung infections and asthma. At Children’s Medical Center they did not have a full time pulmonologist. He came to town 2 times a month to do clinics. We went to the appointment only to find out that the doctor had been in a car accident on his way in and would not be coming. They had us see the developmental pediatrician just to get the process started.
Based on his medical history, they’d planned on doing some lab work to test for immune issues. When the pediatrician examined S to find that he was not only not developmentally delayed, but way ahead of schedule, he cancelled the lab work. He told me that all children with immune deficiencies are behind on milestones.
He was very concerned that my 7 month old son was not babbling or making any sounds other than laughter and crying. He ordered hearing tests for him, but we’d have to wait until after m y brothers wedding June 2. We’d be out of town for the wedding for 2 weeks. The tests were scheduled for the day after our return.
As an interpreter for the deaf, I was alarmed, scared … worried. He was also concerned because he had a condition known as "Meatal Stenosis” where the urethra is too small, his was almost blocked. He wanted to do surgery. He called the primary doctor before we left who said that with all S had been through, he’d prefer to wait. Frustrated, and in strong disagreement, he told me to talk to the family doctor and make my own decision. Let him know and he’d make the referral to have that taken care of. When I talked with the primary doctor he said that about ½ actually need surgery. It is a condition that CAN be outgrown, usually by age 4, but the surgery was invasive. For a girl, they go in and do 4 or 5 surgeries. A boy, they do 1 …but there is the requirement of placing a stent into the penis for 5 minutes a day 4 times a day. I opted to wait and see.
We got to California and stayed a couple of days with my cousin. S kept up with her kids, the younger one was a year older than him. But he crawled right after them and they had a ball. While we were in the Bay Area, he had 4 teeth come in. He never acted like he was teething, they just were not there one day and there the next.
We arrived in Central California to my Dad’s house and called my husband who was visiting HIS brother in Montana. I put the phone to S’s ear, tearing up because it was a reminder that we were facing possible hearing loss. Suddenly S’s face brightened up and he said clear as a bell “DADDY!”
Well, alrighty then! No hearing loss, just a refusal to make sounds till he could make sense of those sounds. By the time we left California he could say Daddy, gampa, gamma, dog, coke, bean (green beans), pool, and cow. He also, at 8 months old started to walk while we were there. He took his first steps on Father’s Day and was walking before we left 3 days later.
I got back into town and called the developmental pediatrician and told him. He said that was odd, but he wanted to hear him speak before he cancelled the test. We didn’t need an appt, he’d just come out to the waiting room between appts for other children and hear. We did, he did and he shook his head and cancelled the test. He had no explanation of how or why he’d been silent till then. (we would later learn this is a bedrock of his behavior .. do not do something till you can do it RIGHT the first time.)
We were back in town for 10 days when S woke with another 105 fever. Back to the doctor and into the hospital. Breathing treatments for the pneumonia, and more tests to see if the reflux was causing the problem. This stay was only 5 days, but was 5 days too long.
The family doctor again sent him to CMC to the pulmonologist. We arrived and the doctor was there this time. They did chest x-rays and lab work before the doctor saw him. When the doctor came into the examining room to see this 8 month old child walking. He immediately apologized for the lab work, saying if he’d realized he was so far ahead on his milestones, that he’d not have ordered the tests. His lungs were less than clear, and he ordered a breathing treatment. When he came back in, he was moderately happy with the results, but would have liked them to have been better. He sent us home with 3 inhalers and a spacer to use to administer the inhalers.
His diagnosis was “Reactive Airway Disease” but he did not feel it was allergic asthma, but rather weakened lungs. He had no answer as to why this child who’d had way too many ear infections and pneumonia’s could actually walk 4 months early.
A few weeks later, on a Sunday afternoon, the phone rang. It was the developmental pediatrician. He had some news for us and an apology for not having tested him when he first saw him. Samuel had a condition called “Hypogammagobulinemia” It is an IgG subclass 2 deficiency. It is a syndrome that comes with a cluster of symptoms and usually developmental issues. The primary problem aside from developmental was bacterial respiratory infections. He was immediately started on a low dose, daily antibiotic. The pediatrician said that he needed infusions of IVIG .. Intravenous Gamma Globulin. They would start on the paper work. Because he was on Medicaid, it would need pre approval and recommendation of 3 doctors.
The primary care doctor signed off on it, as did the developmental pediatrician, but the pulmonologist wanted to wait. We wound up going back and forth with any 2 of his doctors at any given time being for it, but the others not. When we finally did get 3 doctors to approve it, there was a recall and he never did receive it.
When August hit, I went back to school. The heat of the summer was getting to me and the weakness was back in full strength. The family doctor had retested me four different times never able to repeat the high blood sugar. He decided that it was a fluke and I did not have diabetes or pre diabetes.
As I went back to school, it was during this time that my eating disorder returned with a vengeance. I’d managed to put it on hold while pregnant, and was just too sick to pay attention to it after. I ate when I could … there was something about not being able to eat that made me more willing to eat. I guess it’s my typical rebellious nature bucking at the lack of choice.
I returned to the diet pills and laxatives of my pre pregnancy state, and while I could not exercise like I had, I still did do some. Whatever I could.
In early September, I woke up one morning throwing up. I could not stop and when D took me to the doctor he was alarmed. I don’t remember why, but he put me in the hospital. I missed a whole week of classes.
In October we celebrated S’s first birthday. Many people at his party and his refusal to eat cake instead demanding Geen Beans made it a memorable experience. We put him to bed that night and as I kissed him, I realized he was too warm. He wasn’t acting ill, so I just put him to bed, but in the back of my mind I was going “oh boy! Not again!”
The next morning we got up and called the doctor. He was admitted, again, from the doctors office to the hospital. Another case of pneumonia. While he was in the nurses tried to convince the IV nurse that his foot was not appropriate for this child. She kept insisting that 1 year olds can’t walk that well and will not walk on a foot with an IV in it. (She’d been unable to access his arm) After he’d walked out 3 IV’s, the doctor finally ordered one to be placed in his head. This looked awful, rather frightening, but it was an easy access and he got tangled up in the tubing less than he had even in the arm!
A nurse walked into his room to give him his breathing treatment. He stood up and placed his hands on his hips and in a very clear voice said “Don’t you do that!” To which, we busted up laughing.
During this time my health was getting worse and worse. I’d been unable to chew again and was torn between making my desperate need to loose weight and my inability to chew.
The class after the Thanksgiving break, I went to walk to my classroom. I stopped for the third time to rest and was unable to stand up, my legs simply would not work. There I was, a 25 year old woman and I couldn’t even move my legs enough to change positions much less stand up and walk. Terrified, I sat there for 3 hours, trying every few minutes to move. When I’d finally gained enough strength to walk, having missed my class, I left. I started the procedure to drop classes the next day. I was just 2 weeks form finals and it was too late to officially drop. I had to have instructors approval. My General Physical Science professor would not hear of it, insisting I take an Incomplete. I was unable to finish the work the following spring and it has been on my transcript as an IF.
I chose to go back to school, against my family’s wishes but I really thought getting out would help. I took 2 classes, an evening meteorology class and a day time humanities 2. I struggled with both, there were days that to get to class I had to stop 5 or 6 times on the way. My mom had decided meteorology sounded fun and took it with me. Having her to read me the text and drive me to and from class probably were the only thing that got me through it.
By February, my symptoms were not getting better. The doctor referred me to a neurologist. I went and saw her, she took a complete history.
She asked about symptoms, family situation, history .. and then told me that she felt there was nothing wrong, but she would run the tests to make sure.
She said that I needed attention, and evidently, this was the only way I knew how to go about it. I asked her what made her say that. She said “Because you have every symptom I asked you about, you even had pain on your face when I pressed on the cheeks.” (years later, I’d finally get referred to ENT to evaluate for sinus surgery. He said that it was a chronic sinus infection …probably there from my pre teen days …gee, and it’s amazing I had pain on my face?)
She ordered the tests, only to find out that since I was on Medicaid, they did not cover outpatient testing. So she told me to go home and be a parent.
In late March, swallowing became nearly impossible. I choked and choked. I wound up severely dehydrated and my primary doc admitted me for fluids. He called the neuro and said I was ill and in the hospital. Come do the tests. She came in, annoyed that she’d been called back in but agreeing to do the testing.
She did an EMG, blood work, EEG, CT scan, MRI … and full evoked potentials and then dismissed me. The nurses were confused because a test involving an IV had been ordered, but not done.
She informed me that all the tests were 100% normal and that there was absolutely nothing wrong with me, just as she’d suspected. She slammed my chart shut and walked toward the door. As she reached for the door knob, I said “if stress and depression is making my body feel like this, behave like this, should I see a psychiatrist”
Her response still rings in my ears
“No, you need to stop being a baby about being a new mother.”
I went back to my primary care doctor, scared, worried, worn out and weak. The thing was … I wanted her to be right! I wanted it to be all in my head. I did not want something seriously wrong with me! I didn’t even want something moderately severe with me!
My primary doc got the letter from her saying that she’d ran all those tests and they’d been normal. He did state that most specialists doing this amount of tests give him more than just their eval, but copies too, but a few specialists only give their interpretations. Because of that, he’d like me to see someone else. I refused. I just needed to grin and bear it.
Maybe I was trying too hard to get attention. Maybe having a sick child was making me crazy?
In April, S got pneumonia bad enough to be hospitalized again. It started with a typical URI .. then the fever went out of control. Found in the doctor’s office, quickly responded to antibiotics, but 2 days after the last dose, we found ourselves at 5 am in the ER with a baby who had 105 fever. It would not be the last time we saw 105.
They gave IV antibiotics and sent us home. As had happened before, an infection was making its rounds around pediatrics and they felt he’d be better off at home. We took him home and around 10 am, he was sitting, rather joyfully, in his walker. He rolled over and SQUEALED with glee. He’d been chewing on a white cloth diaper. I looked and that diaper was covered in blood. Before I could react, I realized I was seeing the very tip of a tooth. *whew!* why didn’t anyone tell me that gums bleed when that tooth breaks through! I might not have noticed had he not been chewing on white. I might not have panicked like I did, had we not spent the night in the ER.
2 days after his antibiotics were done, his fever was high again. Another call to the doctor who said there was only 2 kids in pediatrics, and neither had anything contagious, we were going to admit him for long term IV antibiotics. This time, he had pneumonia, again. We stayed for 8 days … I only sort of remember it.
The day after he got out of the hospital, I was at school and participated in a student health survey. They did several tests including blood sugar. Mine was elevated, they called it diabetes, but I found out later that it was in the pre diabetes range.
I went on a diabetic diet, and felt better. My primary care doctor and I both thought maybe the weakness and fatigue had been a blood sugar issue.
S was dedicated at church with 17 other babies. 2 of them, friends of ours. After church that day we went for a Barbecue with some of the other families who’d participated in the dedication. All was fine, and we stayed late into the evening. The babies had all fallen asleep in play pens in various rooms in the house. We were playing a game of some sorts when S started to cry. I went to check on him and he was burning up. My friend helped me to take his temperature, trying to comfort him. He had 104 fever so back to the ER we went. Ear infection. Again.
In early May S was sent to a Pulmonologist for his frequent lung infections and asthma. At Children’s Medical Center they did not have a full time pulmonologist. He came to town 2 times a month to do clinics. We went to the appointment only to find out that the doctor had been in a car accident on his way in and would not be coming. They had us see the developmental pediatrician just to get the process started.
Based on his medical history, they’d planned on doing some lab work to test for immune issues. When the pediatrician examined S to find that he was not only not developmentally delayed, but way ahead of schedule, he cancelled the lab work. He told me that all children with immune deficiencies are behind on milestones.
He was very concerned that my 7 month old son was not babbling or making any sounds other than laughter and crying. He ordered hearing tests for him, but we’d have to wait until after m y brothers wedding June 2. We’d be out of town for the wedding for 2 weeks. The tests were scheduled for the day after our return.
As an interpreter for the deaf, I was alarmed, scared … worried. He was also concerned because he had a condition known as "Meatal Stenosis” where the urethra is too small, his was almost blocked. He wanted to do surgery. He called the primary doctor before we left who said that with all S had been through, he’d prefer to wait. Frustrated, and in strong disagreement, he told me to talk to the family doctor and make my own decision. Let him know and he’d make the referral to have that taken care of. When I talked with the primary doctor he said that about ½ actually need surgery. It is a condition that CAN be outgrown, usually by age 4, but the surgery was invasive. For a girl, they go in and do 4 or 5 surgeries. A boy, they do 1 …but there is the requirement of placing a stent into the penis for 5 minutes a day 4 times a day. I opted to wait and see.
We got to California and stayed a couple of days with my cousin. S kept up with her kids, the younger one was a year older than him. But he crawled right after them and they had a ball. While we were in the Bay Area, he had 4 teeth come in. He never acted like he was teething, they just were not there one day and there the next.
We arrived in Central California to my Dad’s house and called my husband who was visiting HIS brother in Montana. I put the phone to S’s ear, tearing up because it was a reminder that we were facing possible hearing loss. Suddenly S’s face brightened up and he said clear as a bell “DADDY!”
Well, alrighty then! No hearing loss, just a refusal to make sounds till he could make sense of those sounds. By the time we left California he could say Daddy, gampa, gamma, dog, coke, bean (green beans), pool, and cow. He also, at 8 months old started to walk while we were there. He took his first steps on Father’s Day and was walking before we left 3 days later.
I got back into town and called the developmental pediatrician and told him. He said that was odd, but he wanted to hear him speak before he cancelled the test. We didn’t need an appt, he’d just come out to the waiting room between appts for other children and hear. We did, he did and he shook his head and cancelled the test. He had no explanation of how or why he’d been silent till then. (we would later learn this is a bedrock of his behavior .. do not do something till you can do it RIGHT the first time.)
We were back in town for 10 days when S woke with another 105 fever. Back to the doctor and into the hospital. Breathing treatments for the pneumonia, and more tests to see if the reflux was causing the problem. This stay was only 5 days, but was 5 days too long.
The family doctor again sent him to CMC to the pulmonologist. We arrived and the doctor was there this time. They did chest x-rays and lab work before the doctor saw him. When the doctor came into the examining room to see this 8 month old child walking. He immediately apologized for the lab work, saying if he’d realized he was so far ahead on his milestones, that he’d not have ordered the tests. His lungs were less than clear, and he ordered a breathing treatment. When he came back in, he was moderately happy with the results, but would have liked them to have been better. He sent us home with 3 inhalers and a spacer to use to administer the inhalers.
His diagnosis was “Reactive Airway Disease” but he did not feel it was allergic asthma, but rather weakened lungs. He had no answer as to why this child who’d had way too many ear infections and pneumonia’s could actually walk 4 months early.
A few weeks later, on a Sunday afternoon, the phone rang. It was the developmental pediatrician. He had some news for us and an apology for not having tested him when he first saw him. Samuel had a condition called “Hypogammagobulinemia” It is an IgG subclass 2 deficiency. It is a syndrome that comes with a cluster of symptoms and usually developmental issues. The primary problem aside from developmental was bacterial respiratory infections. He was immediately started on a low dose, daily antibiotic. The pediatrician said that he needed infusions of IVIG .. Intravenous Gamma Globulin. They would start on the paper work. Because he was on Medicaid, it would need pre approval and recommendation of 3 doctors.
The primary care doctor signed off on it, as did the developmental pediatrician, but the pulmonologist wanted to wait. We wound up going back and forth with any 2 of his doctors at any given time being for it, but the others not. When we finally did get 3 doctors to approve it, there was a recall and he never did receive it.
When August hit, I went back to school. The heat of the summer was getting to me and the weakness was back in full strength. The family doctor had retested me four different times never able to repeat the high blood sugar. He decided that it was a fluke and I did not have diabetes or pre diabetes.
As I went back to school, it was during this time that my eating disorder returned with a vengeance. I’d managed to put it on hold while pregnant, and was just too sick to pay attention to it after. I ate when I could … there was something about not being able to eat that made me more willing to eat. I guess it’s my typical rebellious nature bucking at the lack of choice.
I returned to the diet pills and laxatives of my pre pregnancy state, and while I could not exercise like I had, I still did do some. Whatever I could.
In early September, I woke up one morning throwing up. I could not stop and when D took me to the doctor he was alarmed. I don’t remember why, but he put me in the hospital. I missed a whole week of classes.
In October we celebrated S’s first birthday. Many people at his party and his refusal to eat cake instead demanding Geen Beans made it a memorable experience. We put him to bed that night and as I kissed him, I realized he was too warm. He wasn’t acting ill, so I just put him to bed, but in the back of my mind I was going “oh boy! Not again!”
The next morning we got up and called the doctor. He was admitted, again, from the doctors office to the hospital. Another case of pneumonia. While he was in the nurses tried to convince the IV nurse that his foot was not appropriate for this child. She kept insisting that 1 year olds can’t walk that well and will not walk on a foot with an IV in it. (She’d been unable to access his arm) After he’d walked out 3 IV’s, the doctor finally ordered one to be placed in his head. This looked awful, rather frightening, but it was an easy access and he got tangled up in the tubing less than he had even in the arm!
A nurse walked into his room to give him his breathing treatment. He stood up and placed his hands on his hips and in a very clear voice said “Don’t you do that!” To which, we busted up laughing.
During this time my health was getting worse and worse. I’d been unable to chew again and was torn between making my desperate need to loose weight and my inability to chew.
The class after the Thanksgiving break, I went to walk to my classroom. I stopped for the third time to rest and was unable to stand up, my legs simply would not work. There I was, a 25 year old woman and I couldn’t even move my legs enough to change positions much less stand up and walk. Terrified, I sat there for 3 hours, trying every few minutes to move. When I’d finally gained enough strength to walk, having missed my class, I left. I started the procedure to drop classes the next day. I was just 2 weeks form finals and it was too late to officially drop. I had to have instructors approval. My General Physical Science professor would not hear of it, insisting I take an Incomplete. I was unable to finish the work the following spring and it has been on my transcript as an IF.
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