Home sweet home

Tonight my baby sleeps in his own bed.

His favorite mobile that has been singing to him since birth lulls him right to sleep.

This boy never ceases to amaze me. Sunday evening they started peptiman jr. A pre-digested formula, in hopes that we could get his gut to accept food. After we got to 15 mls, the wretching, crazy heart rate, started up again. I told the attending that came on Monday, that I wasn't holding my breath that pushing his gut was going to make it work! Yesterday, she promised that if by today, he wasn't any farther, we'd call his GI and get her opinion. They went super slow, only upping every 6 hours. To 20, he did ok. This morning I called, he'd gotten up to 25, and was still ok! I couldn't believe it, we were going to be able to go home! His heartrate is still higher than normal, and the teeth grinding is severe, so he's still uncomfortable, but he's getting food!
His eyes are a bit more perky.

His calcium has been super low, so has his potassium, so his gut is still being weird. He has DiGeorge anomolies, and one of those is hypocalciumia, so he has chronically low calcium. He gets 600 mgs of calcium a day, and that keeps it on the low end of normal. Right now he is on 1000 mgs a day to keep it there. We'll be checking that frequently, to try and prevent what happened last time he was on huge doses. He'd been in the hospital for almost a month with feeding problems. Once home, his calcium jumped way up, putting us back in for 3 days to flush it out of his system. That was one of my first posts on this blog!

Let me out!

Probably our last wagon ride out in this hospital.

As usual, he came home battered and bruised. 9 days of constant tries for access. They got pretty creative this time. See that bruise on his finger? Yep, they got an IV there.

Both feet were good places this time. His ankle is bruised from a failed attempt, and then they got one almost on the bottom of his other foot!

I'm not sure how long he'll be on this formula, they would like to get him back to normal formula. My biggest concern is going back to feeding in his tummy. With this big aspiration, and knowing his nissen is not working well, I'm not willing to do it. I plan on talking to our GI tomorrow, and seeing what she says. My guess is we'll have to bring it up to a new surgeon in California, since we move in about two weeks.

I think after every hospital stay, my love for this boy gets stronger and stronger. I feel like I'm in the presence of a real life angel. How did I get so lucky?
His little, 25lb, 5 year old body endures so much. How in the world does it keep working? Two weeks after a 24 hour stomach bug, he is finally tolerating very slow feeds into his gut, still not into his tummy.
Rarely does this warrior fuss. I don't think he cried at all in the last 9 days. I can't even count the IV pokes and blood draws, or how his tummy must have been screaming when not tolerating feeds. The only way I know he is hurting is the sound of his grinding teeth.
He is a truly amazing little boy!

*So sorry to those that have emailed or commented offering help. I'm really not ignoring you, I just haven't had a second to respond. Although I do admit I have a hard time letting people help me. I guess I just feel like I'm putting people out.