Day 32 July 6, 2009

We finally left the Pediatric Observation Unit this afternoon. It was about time. We got settled in and I think Cody feels better. It was good to have my dad here for 'the move'. I was able to get away tonight to have dinner with dad. Cody's uncle Jim came to sit here for an hour. It was nice to get out and to spend some time with my dad. I am still concerned about Cody's mental state and have been working and encouraging him to respond and interact more. It is tough. He is a typical 16 year old but also a stubborn one. I think he is tired of being here too.

The counts are coming in. His ANC is .08 and white blood count is 1.2. Slowly but surely.

Day 31 July 5, 2009

Sunday-Today was a good day. Cody was up and walked to see the fish again. He says he is a little bit better. His ANC (absolute neutrophil count) is coming in. This is the infection fighting white cells that come in first. We are very happy with this. They actually came in Saturday which may have been why he felt so good and walked around a bit more than ever. All of these counts fluctuate but the fact that they have made it to his peripheral blood is a good sign.

We played a game with grandpa today and Cody did well. I think he knows he is beginning to pick up. We talked about going home too although that will not happen for maybe 2 weeks is my guess.

Day 30 July 4, 2009

Our doctor is away this weekend but the doctor on call came to talk to me. We had stopped one of the antirejection meds but because of the level, it was technically still in his system. She felt since he was doing so well that we could re introduce it. That happened last night. This morning at 6 he woke up telling me he needed the nurse. He then told her that she stole his car and continued with a story about this. So the confusion was there again. The medicine was stopped immediately and we started something new today. Well, it is very quiet here at Sloan today. So quiet that the day clinic is closed. We are about 10 steps away from it here in the unit and our nurse had a great idea. She said we could go walk there. There is a nice salt water fish tank and we could look at it. It was a great idea. So we suited Cody up in gown, gloves and a mask and took a stroll. He did so well for not walking in like 30 days. I took him back in the afternoon and there is a couch in front of the tank and he and I just lounged there for about 20 minutes. He seemed so relaxed. Later when my dad came, we went back a 3rd time and just looked at the fish. He bite a whole in his lip so that was the excitement of the day. Hard to get it to stop bleeding. We gave him platelets and finally it did stop. Now I just have to watch him. I hope everyone enjoyed their 4th.

Day 29 July 3, 2009

I cannot believe we have been here 39 days. We were thinking we would be so bored here.

Today was an ok today. I do not like that Cody is so lethargic like. He is kinda like a zombie, speaking very little and not really interacting. He is up and sat in the chair and ate an ice. His white blood count is 1000!!! That is amazing and so good. The EEG did not show any seizures so they are being regulated with the medication. This is what is making him so groggy. Maybe he will sleep better tonight. He still has the EEG hooked up and that comes off tomorrow.

The doctors are convinced that this was all brought on by one of the anti rejection meds and not the other. So they are slowly introducing it again tonight and hopefully there will not be any changes. I am hoping that this is the home stretch! My dad comes tomorrow so maybe he is our good luck charm.

Day 28 July 2, 2009

Hi friends,

Today was a bit of a more relaxing day. We have learned about epilepsy and what it entails to keep it under control. We will follow up with a special doctor when we leave here. Apparently Cody has had epilepsy for a long time. This would explain the intensity of his illusions and odd behaviors over the years. I feel bad not detecting it and he has been seen by 2 nuerologists on Long Island and had two different MRI's. I am glad we have to under control and Cody can be assured that the behaviors will stop. We talked to lots of neurologists today and I was even video taped as I told the story of the his experiences. Today Cody was kinda quiet as the anti seizure medicine does that to you in the beginning. He ate a little ice and a purple ice pop but that was a bit too much. He is having another EEG overnight tonight so we can look for seizure activity.

I tell him everyday how strong and amazing he is and today and he now he knows he is. He is so sweet. There lots he wants to do when he gets out and he misses his dogs the most.

Actually I might too.

Day 27 July 1, 2009

This day goes down in my book as one of the worst days since hearing the awful diagnosis.

We did not sleep last night, as Cody got progressively worse with his confusion and amnesia. He got obsessive and persistent and he was talking to his phone without it being there. He would not let me lie down. We tried movies and every show on the tv but nothing could calm him. I was out with nurses letting them know that it was getting worse. It was so upsetting to watch. By 6 am, I was getting persistent. The neurologists and our doctor was paged. A repeat MRI was ordered for this morning. I spoke with several different doctors throughout the day. Cody made it through the MRI and there 3 neurologists waiting here in the room when we got back from the MRI. They said they saw something more in his brain and recommended a spinal and another EEG. I lost it at this point. Our doctor came in and was worried about a spinal due to Cody's low platelet count. This worried me to see her worried. We were getting settled in the room and Cody was having some trouble breathing so the nurse practicioner was here. He started to yawn, one after the other. Little did I know, but this was seizures. The EEG confirmed it. Our doctor returned a few hours later to tell us that this behavior is from the anti rejection drugs he is getting. He still has the virus but it did not go to his brain. The two drugs were causing the inflammation. We had a new plan to treat the seizures and introduce a new anti rejection drug from a different family of drugs. I cried again but I felt we could deal with this better than an infection in the brain. We would not have to do the spinal now.

I cannot begin to explain his behavior. He was adorable in it but totally confused and I hope he does not remember any of this. However, it is something I will never forget.

On a positive note, Cody's counts are coming in, slowly but surely. He ended the day being at .7.

We will take it!

day 26 June 30, 2009

Tuesday: Cody had the EEG last night and it was read this morning and revealed no seizure activity, thank goodness. His counts are .3-.4 and it is normal to fluctuate. Cody was able to do some PT with Vivian but it made him so tired. He did not sleep all that well so we are both a little cranky. The skin biopsy told us nothing more, either from medicine or graft vs host disease. The bone marrow biopsy showed lots of baby red blood cells and no leukemia! We were happy to hear that. Now just focusing on amnesia issues. We will do a repeat MRI later this week.