Hanging in there

 

Things are going ok here. Maddy is getting a little stronger each day. Yesterday was mostly good. She was able to eat better than she has in a while. She also had a few visitors who kept her spirits up throughout the day. No more headaches yet. Dr. Haddad came in this morning and said if she gets a headache it could be be a sign she is retaining Co2 again and she should put on the BiPap until it goes away. Another bright spot in the day was the ballons above. One of the record labels I work with sent them to her in the morning. It was very sweet and brightened Maddy's day!

Although the activity is good for her and boosts her spirits she seems to be paying for it a little today. She didn't sleep very well last night, not that she ever sleeps well in here, so that's not helping. She seems a bit more worn out today and her back has been giving her fits this whole time too so that's a bit frustrating. The other thing going on right now is that she still has really bad tremors. That's one of the symptoms of the Co2 overload. But it's also one of the side effects of her anti rejection medications. Not sure why they are so bad right now but it's bothering her.

On another bright note, we had one of our favorite nurses yesterday, Flavia. At one point we were talking about video games for some reason and reminiscing about Maddy's days in the children's hospital when they had an Xbox in each room and she would bring her guitar hero for jam sessions. Well without telling Maddy, Flavia called the recreational therapy people and put in a request for a video game system. So this morning they came around with a Wii and a bunch of video games! When I got back from work Maddy was playing guitar hero! She looked up smiling and said "Flavia is my hero!" So sweet!

Other than that we are just taking things a little at a time. Still waiting on word of when they will have her machine for home. I think once we get the machine they will train us in it and then they want is to use it here at the hospital for a few nights while they monitor Maddy. Then we take it home and go at it.

Thanks again for all the prayers and positive thoughts. I'm still processing the fact that there is no chance of getting Maddy re-transplanted. Maybe I will post some thoughts about it on my personal blog but I'm not sure yet. Maddy has decided that she just wants to make the best of the time she has left. So short of a miracle, which you can pray for by the way, please pray that Maddy gets strong enough to be able to get out and about again and have a little bit more of a life before things get worse.

 

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