Wednesday July 17thBoth Grandma and I got up pretty early. Neither one of us slept too well the night before. I could tell she was tired, but I was doing better. I was using words correctly, but I was still having a hard time finding them. I would want to say something and the word would be on the tip of my tongue, but I could not come up with it. I was also off with the present date. I really had no idea what year it was. When Dad got there he went out and got me a doughnut for breakfast. He brought me back this huge glazed doughnut. It was so good. Lol I ended up eating the whole thing and both Grandma and Dad were surprised. After the doughnut I still ate some of the breakfast that the hospital gave me. I say some because most of it did not taste that great. I was trying out what they had and still wasn’t sure what was good and what wasn’t. Hospital food is far from great, but after trying things I learn what is good and what I should avoid. The one problem I had from eating the doughnut was my blood sugar. When the nurse checked it before lunch, it was a little over 400. A normal blood sugar should not be above 200 after eating. The Prednisone really affects blood sugar. I am use to being able to eat what I want when I want so this is going to be a learning curve.
My doctor came in and talked to me about the night before. She told me that I did not have another stroke. They were not sure exactly what caused me to show symptoms again, but my transplant team believed it was something called Posterior reversible encephalopathy syndrome (PRES) caused by my anti-rejection drug Prograf. Due to this I was taken off of that one and put on Cyclosporine. They said that a small population of people do have reactions to Prograf and have to be taken off of it. She said it might take a couple days to get better because it was going to take a little while to get the Prograf out of my system. Not too much longer after she left neurology came by. It was an older man who was the head of neurology. He was very nice, easy to understand and had a sense of humor. He also brought with him his resident who was equally pleasant. Most of the doctors that I have met here are amazing. This was the second time we had met with him, but I remember this visit a little better than the first. He talked to us more about the stroke I had the week before. He told us that it was a small stroke and he had no doubt that I would completely recover. This was obviously nice for everyone to hear. I honestly had no doubt in my mind that I was going to be ok, but I saw the relief in Dad’s and Gram’s eyes when he said that. I also asked him about my eye sight. It was still hard for me to focus on things. I noticed when I would look at the dry erase board on the wall I would not be able to stay focused on it. It was kind of like a mix between blurry and dizzy. I couldn’t focus in on specific things, especially the computer. He told me that is a residual affect from the stroke. It would take a little while, but it would definitely go away with time. He also told me that the EEG was normal and I would be able to be disconnected from it. This was great news because that is all I was telling everyone. It was so heavy and uncomfortable. I know I was driving my family crazy complaining about it. It wasn’t too long after he left when a woman showed up saying she was there to take the EEG off. This put me in a much better mood. It took her a long time to get all of it off, but she did pretty good and didn’t pull my hair too much.
Nothing else really happened until later in the evening. Gram and Dad left early because they were both exhausted. They both wanted to get to bed early and catch up on some sleep. The two of them left, but I still had Jason, Bobby, Erika and Puneet with me. It was fun to have them over. They were all teasing each other and my nurse was pretty amused by it all. I love the circle of people around me and how they all intermingle. I sometimes love sitting back and just watching them all interact with each other. Their personalities are all so different, but they all come together and if you knew them, you would understand why it is so amusing to watch. LOL I was exhausted, but I refused to go to sleep while they were over. I knew they would be leaving soon and I had plenty of time to sleep. I could tell Erika was worn out too. She was not her perky self and was in a down mood. This was not normal Erika. Very rarely are we in the same room and she is not smiling. She had been coming over every day after her rotation to see me. Presbyterian was about a forty minute subway ride from the hospital she was rotating at and her apartment was a two hour subway ride, but this did not stop her. I could tell she needed a break, but she was not going to admit that out loud. Jason brought some pizza over for all of us to eat. Shortly after eating Jason took Erika and Puneet home and then he went to his hotel while Bobby stayed the night with me. We were going to watch some TV shows on the computer, but I was tired. I could not stay up anymore and ended up going to sleep. Although I was really tired I didn’t sleep well at all. I kept waking up for one reason or another. My back was still hurting and I could not get comfortable. One point I woke up and asked Bobby to go to the vending machine and get me something to snack on. He brought me back M&M’s and Reese’s Pieces. I ate those and then tried to fall asleep after. I was only able to lie on my back because of the incision, but that was the last position I wanted to be in. I kept wiggling around until eventually I did fall asleep.
Thursday July 18th
It seemed like once Bobby and I fell asleep we were constantly being interrupted. A nurse came in for meds, people were coming in for blood, a technician came in for an x-ray… it seemed constant. Once Dad and Gram came in Bobby gave up on sleep. I was use to the constant interruptions, but he obviously was not happy. My grandma told him to go back to sleep, but he said he wouldn’t be able to and he would sleep back at the hotel. He just laid there on the bed for awhile and after breakfast went to the hotel to sleep.
After he left Gram helped me clean up and get ready for the day. We were then informed by my nurse that I should not eat anything else because I might have a broncoscopy later on that day. They weren’t sure if they would be able to squeeze me in or not and would tell me around lunch time. Well lunch time came and so did my food, but nothing from bronc so I made the decision that I was going to eat. I was not going to let my food go to waste just to be told that I would not be scheduled for one. I was planning on telling my nurse to schedule me for Friday instead. Good thing I did that because I found out that they weren’t able to squeeze me in anyways and I would have one the next day. Since we knew I wasn’t going to be going to bronc, I asked gram if she could find me a deck of cards so we could play a game. She went to a store outside of the hospital and got a brand new one because she didn’t want me using the deck the floor offered. She wanted me to have a brand new one that no one has used. Haha Gram, Dad, and me decided to play scat (or some people call it 31). This is a card game where the player is trying to get their cards to total of 31 all in the same suit. You have three cards in your hand, Ace is 11 K, Q, J are 10’s and everything else is face value. It is a gambling game and we used Reese Pieces as our money. As we were playing I realized how much trouble I really was having adding. I had no problem adding numbers to 10, but if I had an 8 and 7 I could not add those together in my head. There were a few times I put the cards down not sure of how many points I had. I needed Dad or Gram to help me with adding them up. I also had them take turns dealing for me. Sitting in a chair and playing was a lot of work in itself so I let them do all the dealing. I had been sitting more and more in a chair, but it still took so much work to keep myself up and it was pretty painful. I was up to sitting in a chair for about fifteen minutes at a time. I am not sure how long the game took but I got through it. Gram lost first. Dad and I went right to the end, but he ended up winning. I ate his loot though. Dad said, “She ate the money!” I wanted to play another one, but my back said no so I didn’t see any harm in eating it. I couldn’t complain though because I really did sit for a long time. Progress!
That night Gram, Dad and Bobby stayed late because Gram and Bobby were leaving the next morning. While we were hanging out I got hungry again and Bobby hadn’t had dinner yet. He ordered some dinner and said he would let me eat what I wanted and then he would eat the rest. Well he ordered his food and I ended up eating about half of it. I could have continued eating it, but I didn’t want to eat all of his dinner. Lol This is a huge change for me. Being sick, I was never hungry. I would take a few bites and feel full. My dad said I would have to be careful with the amount I am eating, because at this rate I would have to be rolled out of the hospital. This is something I am might have to watch out for in the future, but right now I am not worried about it. I am only 81 pounds right now and I have some weight to make up.
Friday July 19th
Today was the broncoscopy. So that took up most of the day. I went in about noon and slept until around 5:00. We were also given the news that I was being moved to floor 8 for rehab. Earlier in the week I was told about the rehab floor and asked if I wanted to go there. This was a definite yes for me. I had to learn how to walk all over again. I already had the walking disability and as the breathing got worse the walking got worse. I could barely take ten steps without being out of breath. I used my wheelchair for everything. My muscles in my legs are so weak from not using them for two years. On floor 7 I was only getting twenty to thirty minutes of PT a day. I knew this was not enough for me to get back on my feet anytime soon. The rehab floor does an hour and half of Physical Therapy and an hour and a half of Occupational Therapy a day, six days a week. Sundays was everyone’s day off. It is a lot of time a day, but this was something I really wanted. I was evaluated by some doctors from the rehab floor and they said I qualified. I was then told I would be going there on Monday. When they told me there was a room available that night I was so excited. I would be able to start rehab one day earlier. The room wasn’t ready until 10:30 that night, but Erika and Dad stayed with me until I moved. After I was settled in they went back to the hotel and said they would be back early the next morning.
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