Well, we made it home on Tuesday night. As anticipated we did not get out of the hospital until 6:30 or so. I must say Maddy's nurse on Tuesday was great! She got everything moving and stayed on top of it all day long to make sure Maddy got out of there as quickly and efficiently as possible. Thats the good news.
The bad news is that this trip to the hospital really beat Maddy down. It really sucks that the stuff they have to do to make her better has to make her so much worse first. So I wanted to write another post so everyone knows that even though she is at home and no longer getting poked and stuck in the hospital she is not really any better. Her entire body hurts all the time. She is still not breathing very well, and she feels sick every time she eats. I'm hoping she will start feeling better very soon. There is not anything I can do to make her feel better and that is a very helpless feeling.
I had to take her with me to work this morning so she could get blood work done. Usually she should just hang out at my office after while I worked but she feels so rotten I took the rest of the day off and brought her home after. Just got a call from the doctor adjusting her prograf levels again, which means blood work next week too. Then a clinic visit the week after that and the monthly IVIG after that. Looks like she is back to weekly doctor visits again for a while. What a pain!
That is all.