The analogy I will use to describe today is as follows: we were off on a hike down the trail, but we lost our way (or maybe we ended up on a deer trail). Although, we were heading in the approximate direction, we’re going to take a few steps back to find the trail again and then we’ll be able to continue forward on a better path.
Today was a day of taking a couple steps back in order to reset, and hope that we can find a better way forward. Every day, we learn a little more about what David and his body like and what they don’t like. This information helps to guide his future care. David has been allowed to retain too much fluid, and it needs to come back off. His diuretics have been increased once again to help with that. With his feeds increasing ever so slightly, once his TPN runs out tonight, that will not be replaced. So, he’ll need his electrolytes replaced more frequently since he won’t be getting some continuously. This includes his sodium, potassium, and magnesium (maybe other things like calcium and phosphate). David’s fluid goal has been slowly creeping up from even, to +100, +150, +200, and yesterday he exceeded that. Now, his goal is once again negative or even. The doctors acknowledge that his BUN (one of the kidney indicators), might just need to be high (but not too high) for David, and they’ll have to be ok with that. His other one (creatinine) is still looking good. Everything is a big balancing act and walking a fine line to not tip any scales drastically from one direction to another.
Another thing today was taking a step back on his withdrawal medication weans and then pausing them. So, they undid a wean or two and then paused them to allow David a chance to adjust. He seems to really be dealing with the effects of withdrawal, so this will allow him the chance to become more comfortable with where he is at before being weaned again.
Next, David had his vent settings increased again. He was initially allowed a brief time this morning off SCUBA to give his skin a break. His lungs sounded very diminished on SCUBA. However, after his treatments and being on RAM, they sounded better, so he was allowed to remain on RAM the rest of the day. He still hates his nasal cannula though and tries to pull that out every chance he gets.
David also had his best OT combined with music therapy session today. He held the maracas for several seconds today, and reached for the tambourine and swatted it a little bit, and also looked at himself in a reflective tambourine. He kept his poker face though – he can’t let them know he enjoys that activity – but he did not cry and was not fussy. Slowly but surely, he’s getting movement and strength back.
Otherwise, David received cuddles today – lots and lots of cuddles. We never realized the nurses needed permission to hold David, so the nurse he had the last couple nights had asked if she could hold him. We were very happy to allow that and said really anyone could hold him (as long as he’s not currently being held – we don’t need a fight), so she made a sign for his bed last night. After she got her cuddles overnight, an awesome hospital volunteer got some cuddles with him today, as did I, his day nurse, and one of the respiratory therapists. David is definitely well loved.
David’s care team sure sounds fantastic, loving, kind, caring, dedicated, conscientious and very in tune to his needs 🙏🏻 OT sounds like a lot of fun. I do believe that your 3 love bugs are going to start a band. David seems to be all in on this and will most likely be the drummer as Eli has already shown significant success on his guitar and I do believe that Anna will be the lead singer! So next time the three kiddos are all together let’s see if you can listen in on their language! I think they’re talking about the band🎶🎸🎙️🥁🪇. Heavenly Father, thank you for your gracious blessings upon David, and his brother and sister and Mommy and Daddy 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻 I pray for David’s care team and that they are always constantly aware of your blessings over all of the children and their families in the hospital.
Sending continued prayers and love for all of you. Thank you for the updates on David and his little personality! I really enjoy hearing he is getting all the snuggle time🥰
The OT/music therapy session shows such growth. David’s time with Eli, Anna and you and his increased cuddles brings a smile to my face and warms my heart. Thank you Lord, for these blessings!
A budding musician, perhaps? The love Eli and Anna show for David is a joy to see. My prayers continue for David’s care team and for you, Adam and the children.
Despite the change in direction David is still on the path! Love the cuddles with Eli & Anna. ♥️
Love the Mohawk! Not too thrilled with his poor bruised face. Great he is going to get ALOT of cuddles now. Just a thought… but teaching David some sign language. Would that benefit him if could commicate like that? Love, wishes, hugs and kisses.!!!