I would like to say that it was another fairly uneventful day today; however, David’s x-ray this morning was showing a bunch of gas in his intestines. The prevailing thought is that this is pneumatosis, so he is still NPO (no feeds), and was started on 3 different antibiotics. This was a fun exercise for his team (especially the pharmacist) as his doctor wants to limit his fluid intake to not anymore than 540 ml (yesterday his intake was 539ml so they gave him 1 more ml to work with). So, the pharmacist had to look at the different antibiotics available to him, and then figure out dosing and frequency to determine which ones would possibly be the least amount of fluid in and then try to adjust David’s TPN as well so he can receive some nutrition. David also receives frequent x-rays to monitor it as well. His nurse tonight said they have absolutely no shot at the 540 ml.
Due to this, we met a bunch of new friends from general surgery. They agree that at this point, they will just throw some antibiotics at it – especially since David is not showing signs of discomfort. David is now becoming known as the kid who will tell you how he feels, so they know if this is causing him pain as they push on his belly. Also, his stools are no longer bloody, and he has had two very large ones today.
As for a cardiac cath, the cardiologist said today that it is still on the table, but for now it will be held off. David’s numbers look good and he looks great except for the fact that he is still intubated. They will try to extubate him again this week, and if that is unsuccessful again then they will likely do the cath to get the pressures and try to figure out why it’s not working. If he extubates successfully, then that cath can likely be held off for a bit.
David is also diuresing very well. Now that the NP who has been following him most closely is off for a week, he’s finally going to do what she wanted him to do. She wanted him to work on his beach body, which he’s definitely doing. His fluid intake/output is down over 300 ml so far today (and her goal which he never met was -200 ml). We hope she doesn’t take it personally – and hopefully she recognizes him when she returns.
David also had some music therapy for the first time today. They combined it with OT to try to give him a nice experience. He let them work his legs, but then it when it was time for his arms, he was done. Maybe next time. I think those were the major updates for today. Well, Eli and Anna made, dare I say it, Friendship Bracelets in the Endzone this evening.
Very nice bracelets! Thank you again for the update on Mr. David. With him, uneventful is good …praying it can be kept that way and that his tummy troubles can be quickly resolved. 💕
Yes! I agree with Kathy, uneventful is good. They sure know how to entertain the kids. That’s wonderful!! Gives you guys a little break. Prayers for you all every day. 🙏 sending hugs🤗