Frustrated At Home

Well its 9:40 pm and we are still waiting for the home health nurse. Simon and the girls are fast asleep and I have spent the last hour + trying to get ahold of anyone who knows who was suppose to come out here to help us figure out how to hook up the TPN so Simon could get some nutrition (which we are not sure was even mixed to his needs since its only allowing for 540 calories and he need 1100 daily). That is what I meant by its not easy getting a home healt nurse out. We are not happy. As much as you don't want Simon to be in the hospital, you also don't want to deal with this and end up doing something wrong. So she is on her way, from orland park, which is not close to us. Its absurd.

Simons results came back from the stool sample that they were able to scrape and so far no rota virus or c-diff, so providing the sample was adequate enough he must just have the bug we have had in the house and since Isa fought it in 4 days my hope is he can do it in 8-10 which would make him feeling better after this weekend. Pray for that for him. His cyclosporine level is down to 46 which is due to the diarrhea but its worrisome to us since that is what has been keeping his donor cell % up and we now will sit and worry/wonder what the vntrs drawn on monday will show. Please, again pray they are 95% or higher in every aspect. One positive thing was that his igg level actually went up 20 points which is pretty awesome indicating he is making his own igg so that is great. Hopefully all other things will start to fall into place. Thank you all for the prayers, please, keep them coming. God Bless everyone. Love Tracy and David