We had hoped to be able to take Dylan home today, especially with the nurse yesterday saying that she thought he would be going home this afternoon. But we weren't. They told me today that they will let him come home probably Sunday or Monday. They want to watch his weight gain, feedings and oxygen intake (they haven't quite decided on if he will be going home with oxygen or not). Plus today his heart has occasionally had an irregular beat. They can't figure out why and while it's not dangerous or anything, want to watch it and try to give him some medicine in the morning if it keeps up to see if that will help. He no longer has an iv. Just has the feeding tube and a very small level of oxygen (one nurse compared it to a small puff of air). He will be coming home with the feeding tube for sure. I wouldn't be surprised if he comes home with oxygen. He will keep his oxygen levels up for a while without the oxygen but it tends to go down lower than they like, especially when he's asleep.
Of course, all of the nurses comment on how cute he is. The picture doesn't show it, but you really should see how red his hair looks in the light. Enough so that Russ thinks his nickname for Dylan may end up being "Red."
4 comments:
Congrats on Dylan's progress! Yay, it will be great to have him home. Will this be the only surgery he'll need?
No, he will need more surgeries throughout his life to resize the artificial vein they put in. Dr. Hawkins said the average for needing the first resizing is 2-4.
Sounds like great progress! For various personal reasons, I would never let them send us home on a Friday ever again. So, I think it's a good thing they kept you through the weekend.
On another note, I am part of a group of Truncus parents online. There are about 250 of us... give or take. From what I've seen, many of the kids go to age 8-12 before needing their first resizing surgery. Not all of them, obviously, but that's pretty great news! I am hoping that by the time Caden needs his next surgery, they will have new technology that will enable it to be his last.
Happy to hear things are going well for you all.
Ashlea
Cindy-
I just ran across your blog from another Truncus friend but anyway it's good to see that you made it home! Dylan is such a cutie! I hope everything goes well a home.
Diane
http://brylee-mann.blogspot.com
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