April 17, 2024

David got to go to the floor and pet Fern today! That was definitely the highlight of his day. Once he felt how soft she is, a smile came across his face and he started petting her – it was a sight to behold. If only the puppies waiting at home would be as calm as Fern is. David also got cuddles with Fern’s mom – she read him some stories and sang to him. David got nice and comfy and did his typical rubbing his head side to side trying to dislodge his nasal cannula. At this point, he hardly has any hair on the back of his head from all the rubbing he’s been doing. Earlier in the day, he got some snuggles in with our favorite volunteer. 

Another highlight is that David is now trying out high flow during the day. He will still be on CPAP with a PEEP of 5 overnight and also as he tires throughout the day, but this is another step in the right direction. The high flow has a different nasal cannula that David has not figured out how to dislodge yet – but he’s working on it. 

David met with his friends from general surgery again. Since he’s had bloody stools off and on last night, it was the next step that needed to be taken but no one wanted to take. They do think that David is ok, but want him to be NPO (no feeds) for 3 days. So tonight, he will start some TPN (right now he’s just on maintenance fluids), and then he can resume his feeds on Friday. They’ll just continue to check in on him and see how he’s doing. Up until this evening, all x-rays have been clear of pneumatosis. However, this evening’s x-ray was not as clear about the lack of pneumatosis, so we’ll see if that changes things. For now, they will monitor him closely and wait for tomorrow morning’s x-ray and see what that shows. 

David had OT this afternoon, and he did so well. OT was impressed with his progress – he even did a couple times of flat tummy time, and got to that position with some assisted rolls. This is very exciting because he hasn’t been able to do flat tummy time since his surgery. He didn’t particularly like flat tummy time, but with some pats and songs, it was tolerable. Every day he gets a little bit stronger. 

This evening the older kids split up. Anna went to the Endzone with Adam and created a beautiful painting – it reminds me of a planet made for Bluey (I think it’s the combination of the color scheme and I have had Gustav Holst’s Jupiter stuck in my head today, which is also the song used as the soundtrack for the Bluey Sleepytime episode). Anyway, I love Anna’s painting. Eli hung out in the room with me and David. When David got a little fussy, I sat him up, and he just stared at his big brother. Eli helped to entertain him by bringing him toys to play with, such as the Thomas stuffy Eli got David for Christmas. David seemed to enjoy holding parts of the stuffy. Otherwise, Eli did a puzzle a couple times and we played hide and seek with an easter egg. Overall, today was another good day. 

3 thoughts on “April 17, 2024

  1. Way to go David👏🏻🥳👍🏻🙏🏻You really had an AMAZING day🙏🏻 Enjoy a good night’s rest for another day of progress 💤Thank you God for your blessings on this sweet child 🙏🏻

  2. Thank you, Lord, for an overall good day. Thank you for the smiles, new experience of petting a dog, cuddles and growth David.is experiencing. Please continue to guide the medical staff. Shower the Tilly family with Your peace, patience and understanding. Amen.

  3. Love Anna’s painting, love that fuzzy blanket and brother play-time, and how fun to be able to pet Fern! Indeed, it sounds like a very good day! My prayers continue for more to come 💕

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