9/26 Hospital Update

Good evening!

Heres our update on our little guy! He woke up again all smiles. Very talkative, really wanted to talk to everyone not sure who he got that from must be Brandi. We had more rounds and here is what the doctors wanted to do with him today.

  1. -Bring his high flow down to 6L, continue with the steroid drops
  2. Talk with ent to see how long we should stay on the steroid drops
  3. Have endocrinology do a consult to make sure he is okay to stay on the steroid drops while he is sick, surgery, any injuries
  4. get back to bolus feeds in the afternoon
  5. One concerning thing was he hasn’t had a bowel movement since Monday so help him with that.

Right after rounds we dropped down to 6L and he hasn’t been killing that all day. Our original plan was to maybe drop to 4L this evening but with the bolus(scheduled) feeds and not having a bowel movement we all decided that we will just drop to 4L in the morning. The little guy did need some help to have his bowel movement but we got that today and he seemed to be a lot more comfortable. This afternoon we started the bolus feeds and he did great so we are going back to g tube feedings schedule and what he was getting before he got to the hospital starting tonight.

Occupational therapy stopped by and built him a wedge to sleep on. It will help at home with his sleep, this was something we have been working on since his sleep study we are gonna try it tonight.

This evening since his IV came out we were able to give the stinker a bath which he loved but wanted to tell us he has wanted one for a couple days. We took this time to hold him for 5 minutes with no wires, no hoses on him and cherished that time. He was doing great without it but know we need to ween him off of it.

We are still on track to maybe getting out of here on Sunday, he needs to be a warrior still and kick this colds butt!

Thank you all hope everyone has a great weekend! And Go mariners!

Walker, Brandi, Tyler

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