April 28, 2024

It was another day of a step back, in the hopes that the coming days are steps forward – but you never know with Mr. David. It’s definitely not a linear progression, maybe a sinusoidal wave added to a linear equation would be a good way to model his trajectory. Anyway, when I arrived, David was sleeping soundly and his oxygen saturations were in the low 90s. I had not seen him that high and continuous since we went home from our first admission. Adam said David had been sleeping for more than 12 hours at that point, but Adam doesn’t always awake when David wakes in the middle of the night and at some point over night David spiked a fever, so take that with a grain of salt. However, his O2 was that high all morning according to Adam. As I was leaving the house with the older kids, they were rounding on David so I was texting Adam my list of several questions. After so many, our provider said she’d stop by after I arrived. 

As we were talking about David’s cares, David awoke, and next thing we know he’s desating and his oxygen is now in the low 60s. The wave form was not a pretty one, but the heart rate matched, so his pulse ox was moved from his hand to his foot. However, he continued to desat, so it was moved to his other foot that doesn’t have clots in his leg, and he continued to desat. He was continuously in the upper 50s to low 60s, but he didn’t look like it since he hadn’t changed his colors. His provider thought he was likely in the low 70s but after moving the pulse ox all over, it was determined that it must be real, and they tried giving him some air to bring it up, and that wasn’t really working. Ultimately, David ended up going back onto his high flow- and a pretty high flow at that – 7 liters at 70%. It was slowly weaned down through the day as he improved, but it was still higher than 4 liters at 21% (room air) where he was last week when he was on high flow. By days end, he’s on 4 liters at 40%  

They ordered an x-ray, and once again his left lung looks hazy. They also decided he could use some blood since the other day his hemoglobin came back lower than David likes it, but at the time it was decided to just monitor it. As he was receiving his blood this afternoon, his sats continued to improve as his hemoglobin increased. The team was so excited to see him off oxygen on Friday, I wonder what they will think when they see him tomorrow.

David also got to play with OT today – he got down onto his floor mat and did some tummy time on his boppy. He was a few seconds shy of doing it for 5 minutes straight. We brought out the tummy time friends book, and David seemed to be very interested in all his friends around him. As OT was wrapping up, Eli and Anna came back to the room and they got to see David on the floor for the first time in a long time. Anna came and held his hands and gave him a hug.

Otherwise, most of the day he seemed very sleepy. They are saying it’s a side-effect of the new med started yesterday, but yesterday they said they usually didn’t observe that effect on kids, so it’s hard to say. His fever was gone during the day, but tonight it is back. They collected a new urine culture today since the one they grabbed the other day showed a tiny amount of growth, but too little to start antibiotics. 

After having a good day of rest, David has gotten fussy again tonight. He doesn’t typically scream, but he whimpers and breaks everyone’s heart. I hope we can find a solution that helps him feel better soon, because the last few days have been very rough on everyone. Hopefully also we can wean from high flow again soon to make wagon rides easier. On high flow, it’s a lot of coordination, since technically he would need Respiratory to accompany him. His OT today said she’s going to start pushing for him to go outside when it’s nice. It’s going to take a lot of coordination, and everyone needs to sign off on it (especially if he’s on high flow since it takes many resources off the unit), but I think he would love to see some trees and hear some birds. 

Eli and Anna spent a lot of time at the endzone. They had a dance party and did arts and crafts. This afternoon, one of the respiratory therapists stopped by and played with them – they loved that! By the time we went home, those two were definitely tired after skipping their naps again.