Home

This hospitalization for Abby has been a roller coaster ride. She wasn't here to recover from something, but that is exactly what I want her to do. It's hard to gauge where she is when she's just as sick as she was a week ago. She is a little stronger with the TPN. They upped that from 12 to 14 hours. But in every other way, she's the same.

I keep hoping a new formula will be the trick, but there doesn't appear to be a trick. We are probably going home today. I'm happy about that, of course. But I'm still nervous. She's a lot of responsibility. The medical team here is in and out all day long. They make adjustments to here care constantly. A 400cc fluid bolus because she looks dry, a new med, a different formula concentration or feed rate. I struggle at home with guessing at all of that.

I feel inadequate or ill equipped to care for her. She is my full time 24/7 job, and when she isn't doing well, I feel like I'm failing. The one single thing I devote most of my life to is not well. I know I work hard and do my best, but that doesn't make my daughter better either. It's frustrating.

So, I've lost count now at the number of times I've brought that child home sick, today adds to the count. There will have to be a place where we stop putting her through all of it. This was as close as we've come. I know in my heart that it wasn't time yet, but I feel horribly guilty for forcing her to hang on when she feels so bad. I would have felt negligent in not giving TPN, so I'll live with guilt.

I just keep praying that we are making the right decisions for her, and that we can find a way to make her comfortable. We are increasing Zofran, and adding Neurontin for belly/spine pain. I don't know if that will help or not. We will follow up with the spine doc outpatient.

Gotta go for one last belly x-ray, then get ready to go home :)