Day 16 Still in Hospital

So it is day 16 and we were hoping to get discharged but alas, we were not. Ian's prograf level is exceptionally high and has been for about three days. The doctors want to try to get that normalized before letting us go. I am totally fine with that as Prograf is the drug for Ian's life. He takes all his meds orally and is a champ at doing it. He will even tell the nurses "I'm a champ at meds." which is really cute. He only struggles with the bactrim and we are conquering that by letting him have chocolate milk between squirts of the pink med.

We got our "discharge" training done somewhat yesterday. I still need to be trained to flush and hep lock Ian's PICC line that he will be leaving with. He'll be on 9 meds for 3 months and after 3 months it will greatly diminish to about 4 or 5 and eventually will be down to just the prograf. The prograf is the size of a tic tac pill and we are working in earnest with Ian on getting him to swallow it so it doesn't have to be compounded. We have bribed him with a new Thomas the Train building for his train table if he can master it-- I anticipate that it will be a while.

I am feeling a bit overwhelmed with everything that will be our new "normal". In some ways the wait for the liver was very easy compared to this next phase. Keeping Ian infection free will be our goal--especially in the first 3 months. I've got antibacterial stuff in my purse already to roll for when we need it. Ian is going to miss the first month+ of sunbeams but that is ok. I am glad he is not returning to nursery with the gooey toys.

All of us are wiped today as we stayed up until midnight the night before watching the Hokies play. So silly of us. We'll get better sleep tonight hopefully.

On to day 17.....