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Home... <3

I've been home for a little more than a week now and it's the best thing ever. Not being able to go to school for over a month, not being able to sleep in my own bed at night, being woken up every morning bright and early just for blood draws, vital checks, etc. Adjusting to life at home with a central line is difficult at first but it's starting to get easier. The routine of things is starting to get normal. Hooking up to TPN at 4pm every day so I can be off before school starts. We've added new medications so I have to remember when to take those. Showering with a central line is miserable having to tape it up and seal it three times around just to make sure it doesn't leak. Weekly dressing changes and blood draws. Life is moving on here though it's our new normal and will adjust any way we need to. Having two kids on IV medications, TPN, and all of the other medications medical supplies isn't easy but somehow we are making it work. I see neurology tomorrow and a new doctor on Friday. Depending on how things go with neurology we may throw a GI appointment in the mix for this week. School is going great! I'm having so much fun with my friends in class. I have an insane amount of make-up work and it's so hard to get it all done but I'm trying.

There are definitely a lot of things I'm upset about right now. Until I get this central line out I can't play any sports. meaning no soccer...Soccer was the one thing that made me feel normal. I could play without worrying about anything else. Now I don't have that. I understand that I have to have the central line for nutrition but I wish it wasn't like that. I would be happy if my stomach started working again! Wouldn't that be nice? It just sucks because right now it is the only way to keep me alive and healthy.