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.