This morning started off with a bit of a shocker to us, hearing that David was on the list to head upstairs. After yesterday, we thought they would like him to be a bit more stable before making the move. It turns out, that was the case and David probably has a few more days down here as he tries to get fluid off and not need as much respiratory support. Our biggest fear is that we’ll get upstairs only to have them send us back down.
David’s been up and down with his oxygen all day. When I arrived in the morning, David was on 7 liters of high flow with 35% oxygen. He was at one point weaned down to room air with 6 liters, but didn’t tolerate that, so he went back up to 30%. His nurse hoped he would be able to hang out there the rest of the day, but David had other plans. He kept requesting more and more, and seemed to like 50%, which is where he hung out the rest of the day.
Toward the afternoon, he started getting a little more gaggy and spitting up again. Upon asking a provider to check his clonidine patch areas since the patches are leaving marks, the provider thought he sounded a little wheezy. So, they ordered an additional respiratory treatment and once again, the dreaded respiratory viral panel test. It would at least give a reason for his additional support, but luckily for the sake of our sanity, the tests all came back negative.
Otherwise, David had a fairly good day. For the most part, he was happy awake, and took good naps. This morning Fern hopped into his bed with him for some cuddles and pets. David really enjoyed that. He won trivia for the second week in a row – it was music trivia. He squeaked out a win over the friend down the hall who has been hanging out for just about as long as David has. The questions greatly varied in difficulty, with questions like “what is the lowest note on the piano?”, “how many symphonies did Beethoven write?”, “What’s a violin’s strings made out of?”, “What type of instrument is a piano?”, and “Who went on an Eras Tour?” After trivia David and I got a good cuddle session in.
After his additional respiratory treatment this afternoon, which included a thorough suction, David was so smiley and giggly. It was hard to leave him for the evening, but the other kids were at home since they resumed swimming lessons tonight. We don’t shuttle them down to the hospital just to bring them home again.
Otherwise, David didn’t really have any changes today. They would like to send him upstairs, but there are a few reservations holding them back. These include his respiratory support which seems to keep increasing, and not decreasing to a stable level. Also, now he’s receiving metolazone daily, which is a little tricky for David as he can drop his electrolytes, and has the potential to for his AKI (acute kidney injury) to rear its ugly head. The nurses in the ICU are more in-tune to those issues and would catch it more quickly. We’ll stay put for now, but it seems to be day to day. At least Fern also visits unit 6, so David will always be able to visit with her.
🙏🏻🙏🏻🙏🏻🙏🏻 Thank you for your updates🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Praying for David’s breathing and fluids to stabilize, grateful the hospital has been waiting for that to happen before moving him upstairs. Praying for peace for your family in this continued time of waiting, and for joy in your time together. I am always amazed at how you have managed to integrate the hospital into your older kids’ lives in such a fun and meaningful way, as one of their home bases. I imagine that’s how Eli and Anna see it (most days!)… And what a village of support it’s been for David. I’m so glad Fern is there for him, and such a close comfort, along with all those other great caregivers who make it such a kid- and family-friendly place. And congratulations once again… You are (uh, I mean David is) quite the Bingo and Trivia player! 🎉