Inserting information

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.

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.