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.

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