March 1, 2024

David has hit a few “milestones” this week that I have forgotten to call out. Wednesday had been 2 weeks since his Norwood surgery. Yesterday has been 4 weeks since he was admitted, and today he is 4 months old! Of all his monthly milestones, 2 months is the only one he’s spent at home (well, he also spent part of the morning of 3 months at home too). Maybe a realistic goal will be to spend 5 months at home – although David loves to remind everyone who is in charge here, so we’ll see what he wants to do. 

In other news, David just can’t seem to catch a break. His liver enzymes are extremely elevated today. His team was hoping it was a bad lab test, so they sent another sample, and the result got even worse. An abdominal ultrasound showed his liver looked normal and there were no blood clots affecting blood flow to/from it. His team also ran some tests looking for viruses, and so far everything has come back negative. They have decided to treat the issue as if his arrhythmia medication is causing the problem. The drug he is on has been known to cause this issue, but usually it happens over a much longer period of time and not this quickly. The doctor on staff here is looking through papers trying to determine if other kids have ever had this problem occur so soon after starting that medication. So for now, they have stopped administering the medication to David, and so far his arrhythmia has not returned. If it does, there is a different medication to try. I think it’s a third favorite medication for this problem, because another one they prefer was not agreeable to David the last time they tried it. Now that the medication has been paused, the hope is that David’s liver enzymes will slowly start to decrease – however, it could take a while because that medication has a half-life of 30 days. 

David is also having a little trouble getting his anti-coagulation values to a theraputic level. He’s currently on a fairly high dose of his medication and still not there, so they may have to change that up. David also got a NJ tube today (this is the feeding tube that goes down to his intestine). Now that it has been placed, David is starting to get a little nutrition other than his TPNs and lipids. It sounds like they will attempt to close David’s chest on Monday. If he allows them to close it completely or to close the bone, then great, otherwise, they will do as much as David allows. Due to the events of today, we made some new friends with the hematology (blood) doctors. They said we probably won’t see them much, but they will be monitoring David. We were also supposed to meet some GI doctors, but haven’t seen them yet. 

Finally, once again as is our new weekday tradition, Eli and Anna come down in the afternoon to have dinner with us, and then they got to spend a good amount of time in the Endzone. This was probably the best day that David has had over dinner in a while – we’ve had to stop telling him that we’re going to eat dinner because otherwise he decides to try some funny business to make sure the attention is still on him. In the Endzone, Eli and Anna had a tea party, played with Thomas the Train, and made some “green eggs and ham” out of pretzels, white chocolate, and a green sixlet. They always seem to have the best ideas of activities down there.