Friday the 13th---not here!

Today we got a call from the transplant team informing us of two great pieces of news. The first is that Ian is now on a weekly lab schedule down from the twice a week current schedule. And second, our next clinic visit is Feb 25th in about a week and a half so we don't have to go next week. Enter boogie music and groovin' all of us :)

With the lab schedule down, we will likely have Ian's PICC line taken out when we are at clinic on the 25th. This means he will be "stuck" each time but at once a week, we feel he can handle it. He had his PICC line dressing (aka his big jumbo bandaid) changed yesterday at MUSC here. Brett was with him and said "It wasn't Ian's finest moment". I can only imagine......

With the clinic visit on the 25th, it is likely that we will drive again although Brett and I will have our weekly "pow wow" session on Sunday night and discuss that further to get details worked out.

We got a letter in the mail yesterday that two of Ian's medications needed to start on a mail-order program per our plan because they were maintenance medications. Suprisingly, our plan does not cover prograf as a maintenance medication even though he will be on that med for the rest of his life and from our understanding he will eventually get to the point where that is the only med he will be on. So a few phone calls later, I have the information to get them on mail order if needed and have stopped the auto newal at the pharmacy we were using in Georgia which does not charge us for compounding the drugs. The compounding charges here are pretty steep and our insurance doesn't cover them despite the fact that Ian is only 3 1/2 and cannot swallow a pill yet. Doesn't make sense to me but that is a battle I have tried to fight with the insurance company and haven't made much headway yet.

I keep trying to push water on Ian to make sure he stays hydrated. Transplant recipients need more water than the average person and his labs show the fluctuation in how much I did or didn't remember to tell him to drink, etc. We have cups in almost all the rooms he plays in (kind of like the germ-x). I find myself saying to him "take a nice long drink from your cup and then we will...play hi ho cherry-o; engines; wii or something like it. My favorite cup location is one that has a handle and is hooked onto his bedside rail so he can drink from it during the night.

With the great news from the transplant team, it is definitely not a Friday the 13th at our house.