day 217 January 7, 2010

Thursday-Today was a day of ups and downs and emotions. Cody woke up feeling blah and upset about not going home and then took a nap. I talked to him about everything before he fell asleep but it did not help too much. He woke up and his dad was here so we played a game and he was fine. Then the team came around and explained about the rejection and why he needs to be here. The steroids are scary and he needs to be monitored. He is worried about his body puffing up and especially his cheeks. I feel so helpless. He gets very down and starts asking the questions..what did he do to deserve this, this should be happening to criminals and not him, it is really sad. I met with a few drs and the psychiatrist and asked for more meds to help his emotional state while we are here. I think once we get home, he will be happier. He is being so strong and so brave through all this. Let's face it, there is a war going on in his body. He will win it but it is draining him right now. There was some talk of us leaving on Saturday so let's hope that happens....stay warm

day 216 January 6, 2010

Wednesday-Today we slept late, like until around 9. The night was good but Cody's temperature, blood pressure and heartrate was lowering during the night. It can happen from the steroids.

Lots of things can happen. He is up and down with his emotions too. He gets upset one minute then laughing the next. It makes you fidgety too. Dr. Kernan came to talk to me today. She explained that what he has been going through looks like the GVHD- the rejection disease. The blood in his stool confirmed it and we were forced to treat with high dose steroids. Steroids suppress your immune system and that is one of the things that caused the HHV6 virus to reach toxic levels back in June/July. We are monitoring that level daily. That was the reason for the MRI on Monday. We have been trying to treat the diarrhea, which was all probably the start of the GVHD and tried to avoid steroids because of his previous reactions. So far he is just emotional and fidgety and is having a few mood swings. He did eat a little by mouth today and he is tolerating the feeds again. We are going slow. He does not want to be here but we have to watch him closely. I went home today and got his cowboy hat so he could show the guy here. The picture is attached. He is worried about his cheeks getting puffy which they are but I explained to him that no one cares, they just want to see him happy and healthy. Let's hope he has a good night.

Day 215 January 5, 2010

Tuesday-well I think I feel asleep on this sleeper chair as if it were cotton. Crashed. And I know this because Cody was up before me and reached over and around me to get his computer and I did not move. Then when I did become coherent, I woke up to him saying..."Good Morning, Sunshine." How sweet it is! He woke up like a different person. He was upbeat and happy all day. Tonight he may seem slightly confused and it a bit edgy. I can handle that as long as it is temporary. His blood pressure is up due to the steroids. His EKG was better than last time and his MRI shows the scaring from the virus but is normal. He is asleep now and it is 9:30 so let's hope for a good night..sweet dreams.

Day 214 January 4, 2010

Monday-A mother should always trust her instincts. I had a feeling Cody was getting sick when he decided to rest most of yesterday. It is always hard to know. On one hand, I feel like he could be getting better and sleeping more because that is what teenagers do. On the other hand, I worry that is he getting sick which was the case. He got a fever around 9 then it went away. I got him up at 12 and he did not have one. Then he got up at 3:30 to use the bathroom and there was a significant amount of blood in his poop. I called on Friday with this issue but was told he did not need to come in. (Next time I will go with my gut.) So out into the bitter cold we go. We got here in record time, no traffic and stayed in urgent care till around 2 today. He was treated with lots of antibiotics and a stress dose of a steriod. Lots of cultures were taken. Finally we had a plan. He will be getting a high dose steriod to stop the inflammation in his bowel. He has been having more diarrhea and now vomiting here. The higher dose can cause his disorientation again so an MRI was ordered for tonight also. He is not a happy camper and feels pretty bad. We are here for about a week to get this under control once and for all. The bottom line is that it is an infection or it is the rejection. He is being treated for infections and the steriod will do the trick for the rejection. Let's just hope he escapes the mental aspect of it. He is nervous about the MRI but they are going to give him valium for it. Today he also needed platelets and a blood tranfusion. He lost a lot of blood. I will continue to keep this updated as we go along. Thanks for reading.

day 213 January 3, 2010

Sunday-Bitter cold here today. Again Cody slept late and was tired today. He went to bed early which had me alarmed. He feels fine in every way so just hoping he is just tired. He does have a little blood in his stool which we will look at on Tuesday. I am hoping that it is ok. I will call tomorrow to make sure. He did not eat anything today but that is ok. Tomorrow the tutors start again so looks like a busy week. I plan to speak with my principal and see what my options are for work. It is a bit scary and I am anxious about it. It will all work out once we get started.

Hope everyone stayed warm today.

day 212 January 2, 2010

Saturday-Cody slept pretty late today. We got up and decided to get lunch out. Cody asked if his friend could go. It is a girl and a friend. So we met her at the Baja Grill and had a nice time. Cody had a few bites of fried ice cream. He loves it. We ate too much so I suggested we walk around the mall. Cody bought a work out stick and I bought a pair of Brookstone slippers. Do you see where I am going here? He buys something to help him become more active and I buy something to make me feel more comfy while resting. Not bad.

We stayed up for the whole Islander game and they won in a shoot out! Cody emailed his buddy during the game to congratulate him on his goal! Such a good boy and a great day.

day 211 January 1, 2010

Friday-Welcome to 2010! This year has to be a better one for us. I feel it and I think Cody is on his way to recovering after this long, hard year. He seems very upbeat and seems stronger.

Today was a quiet day and we took a ride to Target to return something. I took him over to West Hollow's parking lot as he is dying to drive. Because of the epilepsy and the anti seizure meds, he cannot drive. Tell that to any healthy 16 year old and you will see what I am going through. It is hard. He did well and we just kinda drove around for a bit there in the parking lot. We came home and watched a few movies. He tried to eat a little but was not into it. He smiles more, I think so he must be feeling better.

I hope this year is better for everyone. It has been a very trying and challenging one for us but we got through it. When I look back, I honestly, do not know how I got through it. I feel like with all the support from all of you, I was able to do it. Thank you for your continued support..LOVE YOU ALL! Happy New Year!