In keeping with that theme, this weekend has been fairly torturous. We really are just here while they perfect the TPN levels and make sure we are good to go home on Monday. I've been training up on the TPN and PICC line and continue to feel pretty good about it. Another thing the horse world has prepared me for! But otherwise, it's given me and James a lot of time to think about how we'd rather not be here. He's actually burst into tears a couple of times asking to go home. And hopefully nothing gets in the way of tomorrow!! I haven't packed and wouldn't let my mom take anything back to her place. Bad juju and all.
But I have been thinking a lot of those families who don't get to go home. Because as much as sometimes an episode like this can strengthen your faith in God, I can't help but think about the other families who pray just as hard as I do, who are far better people than I am, and their child doesn't walk out that door with them. It's hard to stay blindly positive when some kids recover and some don't and you can't see the rhyme or reason to it. We leave tomorrow (theoretically) but we leave with a catheter to James' heart just so he can absorb nutrients and grow. Where do we go from there? And how long can we hang on until they can figure it out? And if they do figure it out, will there be treatment, or is this it? Not trying to have morbid thoughts, but this is my reality right now and it's scary. I have this extremely vital, energetic, brilliant little boy and he can't sustain himself using one of life's most basic functions. It's staggering to think that not that long ago, we wouldn't have made it even this far. And while I believe in my heart of hearts that he's going to be okay and they are going to figure this out, I also can't help but think that everyone thinks that way and it just doesn't always happen. I don't care if it's now or ten years from now. Or 20. I just don't want a limit like that.
Leading to a lot of these thoughts is that when you live in any hospital, but especially a children's hospital, for any length of time, it's like prison torture. Bright lights, beeping, freezing cold, no one let's you sleep, crappy food, zero privacy, and you hear children screaming All. The. Time.
I'm about done with that. And I feel like it was about 3 weeks into the UVA visit (we will have been here 3 weeks tomorrow) that I had a similar breakdown where I just couldn't stand the crying kids anymore. It's heart wrenching to hear the pain or the fear. I think the fear is the worst and it's so evident.
Our bright note here is a little girl we met who has been here 8 weeks. She got an infection from a stomach surgery and all kinds of complications, and Monday she will have been here 2 months with her mom, while her dad and 2 sisters are home. I LOVE this little girl. I know she's going to be just fine because her spirit surpasses anyone's I've ever met. She hasn't been allowed to eat in over a month, and will hopefully get to try this week. She wants lasagna and if I didn't think it would make her sick I'd go right home and make her one. She reminds me SO much of little Paris, our friend from UVA who didn't make it, and if Tina is reading this, you'll know just what I mean. If Paris got to be 4 years old, and somehow became Pakistani, this would be her. And it gives me some comfort. So please keep this little girl and her sweet mom in your prayers as well.
The other bright spots in my day follows: