So, as most of you already know - LOGAN IS HOME!! They discharged him home from the hospital on Thursday evening. They sent him home on a monitor which keeps track of his breathing and heart rate. Where ever he goes, so does the monitor. It makes it a bit harder to get around with him, but it's nice peace of mind. It's SO nice to be able to see him, hold him, and talk to him whenever I want to. It's nice not to have to make the drive to and from the hospital multiple times a day. It's wonderful to see how he fits into our family, with us, the girls, and the dogs. Yesterday I was home alone with him and he slept on my chest as I watched a movie...the best feeling in the world!
That's the good news. The bad news is the repeat blood work came back abnormal again. This time there were multiple amino acids with elevated levels. Before they discharged him the did an ammonia test, which was normal (a GOOD sign), but he still needs follow up with a geneticist. I have an appointment at UIC tomorrow.
Right now, our biggest concern are his feedings. In the hospital he was eating like a CHAMP and was eating 4oz every 4 hours, like clockwork. Since he's been home he hasn't been eating so well. Right now he's eating 1/2 oz to 2 oz every 1.5 to 2 hours. And since it takes him between 1/2 hour and an hour to eat what little he does, we are pretty much TRYING to feed him ALL the time. Last night Bryan fed him at 11:30 and 1am, I was up with him at 2 and at 4, and Bryan was back up with him at 5:30 and 7:30. I am really hoping this is just a period of adjustment for him, and not a sign of a larger problem...because the larger problem would be Citrullinemia.
It's so frustrating not knowing if this is a normal part of the process or something larger. Hopefully we can find out more next week. He's getting more blood work done tomorrow and they said we should know about 48 hours later. Fingers crossed
When our kiddos came home from the NICU they threw the schedule right out the window. It took us several weeks to over month to get it back to the 4 hr schedule. SO I would say that part is pretty normal. I hope the geneticist has some answers for you.
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