It’s just another one of those days where not a lot of progress was made, and maybe a step back? There were not many changes today, except to wean his ventilator setting slightly. Well, this lasted all of 1.5-2 hours before David was having faster breathing so they decided to undo the change while he’s on RAM and to try the change on SCUBA tonight. However, David’s faster breathing continued after the setting was reset. The next step was to try a PRN (a one-time dose) of one of his weaning medications, and when that didn’t work he got an x-ray to see how his lungs looked to see if there was something that was being missed. Since the x-ray looked fine, he went back onto SCUBA this afternoon/evening at the same rate he was at yesterday and that seemed to help. His breathing slowed down to a more normal rate.
However, that was short lived, his respiratory rate increased again, so he did not get a break from SCUBA. Daddy gave him some SCUBA cuddles this evening. At night rounds, the prevailing theory for his breathing struggles today is related to his fluid retention. They have been allowing him to retain some fluid every day and it is starting to add up. As much as David’s kidneys appreciate this extra fluid, his lungs are having some struggles. So tonight, they will add back his diuretic every 6 hours with a spot dose of another one. Hopefully this will help him lose a little of the fluid he has retained.
Otherwise, this morning, David got some cuddles with Adam before tolerating about 40 minutes of OT with speech today. He’s not liking things with his mouth at this point yet, so we’re going to work with him on more positive associations with touch near it when he’s comfortable. He was also a little tight from missing OT the last couple days, but it was amazing how well he did. No smiles for them though – after all, he can’t let them know that they toys he gets to play with are fun.
I didn’t get as much time down there as I would have preferred, but some days are like that. Eli and Anna did well until this afternoon when they were skipping their naps. Their listening really fell apart, so it seemed best just to bring them home. However, they got to enjoy the Endzone with Adam this morning, and I got some time down there with them after lunch. They made some creative things with magnatiles, along with some sensory crafts and coloring this morning, and then we had lots of Thomas train races this afternoon.
Really love your daily updates. Thinking about your family every day! Miss seeing you in the office and can’t wait to meet David in person!
Cuddles are always a good thing 💕 Praying that his breathing/fluid retention issues can be sorted out quickly and successfully.
Thinking of you all, with prayers for everyone, especially David on his continued health journey this week. Sharing an eclipse day with you!
Love the updates when it’s pretty much same old same old! At least the older 2 were having some fun. Hugs and prayers and kisses.