David had a fairly good day. When I arrived he was already awake and sitting in his high chair rocking out to Taylor Swift. In fact, he was greeting everyone who walked past his room. His provider thought he should still be sleeping. That’s the thing about Davids – they take 2 morning naps and one afternoon nap. Eventually he tired, but at that moment, he was awake and happy. His left hand is gaining strength. I saw one of his toys under his bed so I pulled it out and placed it in front of him. I was certainly surprised when he reached for it with his left hand, picked it up, and then brought it over the side of his chair, dropped it on the floor, and then smiled wide. Oh David! Apparently he’s going to start this game now.
Otherwise, David was also causing minor troubles. His lactate was up this morning. In the past they will redraw it 4 hours later, and it has always returned to normal. In fact, this has happened so many times, eventually they were just checking again the next morning. Sometimes if he’s agitated, that can also cause it to be elevated. Well, this morning they decided to redraw the lab after 4 hours. David was asleep and super calm when the lab was drawn, and then the result came back – it was the exact same elevated result. No one knew what to think of that since he was not showing signs of it being elevated otherwise.
He was on the same respiratory support with the high flow and 30% oxygen. His weight was down from yesterday, so his fluid is slowly coming off, but he still needs the support. So, today they added back in one of his respiratory treatments that was removed a while back – the 3%. This makes him cough but helps him move the gunk out of his lungs. Hopefully this helps him since he’s been coughing some wet coughs but seems to just get his secretions stuck in his throat.
His OT came by today to work on more of the assessment he started yesterday. He has made so much progress since she first met him back in March. Her parts of the assessment she said he was also measuring at the 6month mark – I just can’t believe it. He started to fall asleep toward the end, so he still has the visual tracking portion to do. She didn’t think it was fair to grade him on visual tracking when his eyes were closed as he fell asleep.
Other highlights of David’s day – he won Theme Song Trivia! After that, he got up into his high chair again and had some messy play. I tried out the bananas again, and he didn’t completely hate them this time. He didn’t get nearly as messy (probably a good thing with his cannula and feeding tube tape), but he seemed to enjoy the little flavor he got. Later this evening, while Eli and Anna went to the End Zone, David and I worked on getting caught up on Harry Potter. Unfortunately, we only got part way through the 5th chapter before it was time to go. However, David was pleasantly surprised when the nightly novel started mid-way through the 5th chapter. He didn’t miss much after all. I realized next time, I can just send a message to the studio asking them what we missed (who knows, maybe they’ll send a recording link as well).
I’m not sure what tomorrow brings. He did get an echo today, which was stable. As of today, with the increased lactate and still needing the respiratory support, no one trusts him and they don’t know what to make of him. There was talk about perhaps David can’t go upstairs because Taylor will go upstairs with him and they don’t want to lose Taylor too. Also, the unit is very busy with lots of sick kids, so no wagon rides at the moment. We’re just having to use our other tools to keep him occupied.
Great news about his left hand … picking up a toy … and then dropping it for Mommy to pick it up for him 😊. He is quite a boy, our Mr. David. Praying for good days and (hopefully) more wagon rides soon.