June 3, 2024

Well, today the doctor decided to order the respiratory virus panel test. That was an intense few hours of our lives. As soon as they tested him, David had to be in isolation. This means our family is pretty much confined to his room – with the biggest issues being no End Zone and no wagon rides for David. We were unsure if we could use the family lounge and with the short time frame to come up with a solution, Eli and Anna stayed away from the hospital today since we wouldn’t want them in David’s room either. Now everyone who enters David’s room (aside from family), has to put on full PPE. We also learned that if he tested positive, these kids tend to hold onto the virus for a long time, even when no longer symptomatic, so he could easily be in isolation for over a month. Thankfully, this afternoon all the tests came back negative and his restrictions were lifted. His nurse promptly said to his provider “do not test him for those again!” There was a sigh of relief that we wouldn’t have to figure out a new routine yet again and David can continue to leave his room for wagon rides which is such a positive thing in his life.  

David’s dietician still would like him to get some proteins since it promotes growth length-wise. She said she had decided to try him on the amnio acid that she chose since she did not think he would do well on the other one. Perhaps the other one is harder on the digestive track. Anyway, they decided to give him one more day with no protein and then tomorrow they will start them back up, but at half the dose. Today they also increased his diuretics. The prevailing thought (especially now that the respiratory virus panel came back negative) is that his increased respiratory support is due to him carrying around extra fluid. Finding the sweet spot for David is a little difficult. David also ended up going down for a CTA scan to image his pulmonary arteries, pulmonary veins, and check for collaterals. This was not on the schedule this morning, as there were two doctors who were going to discuss what they wanted for the transplant evaluation – a CTA or a MRI. Apparently they decided on a CTA because next thing we know, vascular is being paged to insert a PIV (peripheral IV) in David’s arm, and once that was placed, then David would travel down to the scan. The IV placement was the best we have ever seen – David hardly made any noise about it either. I accompanied him down to the scan – it was a pretty neat room with twinkly stars on the ceiling and rotating images during the scan. The results of the scan were exactly as we anticipated – pulmonary vein stenosis in 1 of the pulmonary veins, and, narrowing of one of the pulmonary arteries, and no collaterals. Hopefully this helps to answer the questions that the transplant team has to help them make a decision. Otherwise, David was visited by OT and music therapy this morning, and PT and speech therapy this afternoon. PT came right after a nap and David was happy, smiley, and. very chatty. PT was starting a neuro-development assessment as requested by the transplant team. He would have received this assessment back in March as an outpatient, but I had to cancel that appointment. Toward the beginning of this, speech appeared and they kind of tag teamed, and David was just showing off for them. They were saying how he never does some of the stuff he was doing today in his regular therapy sessions, and he was also happy doing it as well. He’ll get more assessments at his next PT session on Wednesday, but today he did the sitting portion. Surprisingly, he is where a typical 6 month baby is! That really surprised me, I thought he would be further behind than that in all categories. Right before PT arrived, I threw on David’s Hogwarts robe, and we started to read the chapter he slept through last night. We did not finish it before PT arrived, and then after therapy, he took a nap. However, Daddy forgot to turn on the nightly novel this evening for him, so tomorrow, we have a chapter and a half to catch up on so he’s ready tomorrow evening. Hopefully they don’t forget again.