I thought I'd try to post a little earlier than normal tonight, so I'm not tempted to skimp and hit the hay tonight. That said, there's not a whole lot of news. I had to work all day so I didn't get to spend a lot of time with Andrew tonight...fortunately, everything D had to report was positive. His fever seems to have subsided for now, and his heart rate is much better than it has been recently.
He got up to 10cc per hour (on his feedings) today which, as I predicted, was just enough to make him spit up again. They moved him back down to 8cc, which is where I had hoped they would leave him. They'll hold him there for a few days, then continue upward. He's also back on a normal schedule of sprints, four times per day for an hour. All his recent gas results have been good, and he's been behaving well aside from when he's feverish.
Not much else to report...I think we're going to have a meeting with the doctor on Thursday, so perhaps we'll talk about a schedule for the next steps.
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Hi guys! Good to hear that Drew's fever has subsided. You know better than anyone that its one step at a time.
ReplyDeleteD, I talked to the nurse of the boy with the trach that you asked about. He actually had the same exact condition that Drew was born with. They were told that he wouldn't make it, but he is now 18. He had a lung surgery similar to what you were contemplating and moved to sea level from Utah so that he could breathe more independently. His nurse said she would be happy to get together with you and talk. She has been with the family for over two years now. Let me know if you want me to facilitate that. Each individual is different, but it might give you some insight. Drew continues to be at the top of our prayer list, as are you two!
Love to all,
Qz