January 23, 2024

Since the last update, David has kind of been all over the place. His biggest struggle has been eating. Some days he eats everything put in front of him. Lately though, he’s been leaving a lot in his bottle and either screams or goes to sleep rather than eat more. Some days he has had a large vomit (and there goes all those calories he consumed and the calories burned to consume them), and other days he has none. Everyday he has varying amounts spit up, which he hates. We’ve been brainstorming potential causes and trying to determine how to maximize his calorie consumption because otherwise from a clinical perspective he looks fine.  His over night feeds usually go well, so we’re going to try to increase the volume of those to hopefully replace some of the missed calories during the day. Over the weekends his weight either stalls out or go down. However, by the time of his appointment, he has put on the appropriate weight within his goal range.

The home nurse came by yesterday and witnessed his spit-up and said that the amount he was spitting up is not normal and  brought it up with his team. We’re going to try a reflux medication and hope to see some improvement. That won’t arrive until Thursday, so maybe by next week we’ll know if it is helping. I also brought up David screaming and refusing the bottle when it came time to eat when just prior he was happy and playing. We have permission to move his feeds around slightly so hopefully he’s hungry and wanting to eat when the bottle is offered. Of course whenever we feel like we have a routine down, it changes. Also, after speaking with his team about this and getting the permission to postpone the feeds if necessary, David proceeded to finish all of his bottles at his normal intervals. 

Last Thursday we saw David’s cardiologist who was back from vacation. It was nice to communicate with her again since she knows him the best. We learned a little bit about the leaky tricuspid valve that they imaged during his cath last month, and are trying to figure out what the next steps are. For the most part, we have an idea of where we are heading, but no clue on time frame. We also do not know how the tricuspid valve will be addressed, but it will likely be added on to his next surgery. Basically, he has a little area near the valve that is perpetually open. It’s unknown if that hole will get larger as he grows, and it’s also unknown how they will go about fixing it. For now, we’ll keep a close eye on it every week to gauge any changes. 

David is currently headed for the comprehensive stage two surgery route. What I learned is that his cardiologist has been involved in the care of just one other child where that was the route that was taken, so we don’t have a lot of data points to go off of. Really, around the country, it is not highly performed, as most hospitals do the Norwood surgery within the first week of baby’s life and then the Glenn around 4-6 months. The comprehensive basically combines the two and performs them when the baby is older and better able to handle such a large heart surgery. The cardiologist also  mentioned David’s surgeon was either involved in a paper about this comprehensive surgery and that the results are very favorable for the most critically ill infants, or the university he came from has been involved in the paper (I didn’t quite follow his relationship to the paper). In either case, the research has shown that although it is a lot, these babies have been able to handle it quite well, and since it is rather new it has not been highly adopted yet. 

Anyway, even though the sample size is small, the components of the surgery are all things that are standard for either the Norwood or the Glenn, so it’s not like it is something that has never been performed before. They will perform an aortic arch repair and open up his septum (no more stent), which is part of the Norwood. Then they will perform the normal Glenn operation to route blood from the top half of the body straight to the lungs (that blood will no longer go to his heart first). However, since this is a larger surgery than either of the others individually, they want the babies to be large enough to handle this more invasive procedure. With that last child, she said the surgery was performed when they were around 7-8 months old, but for David with his leaky valve, she doesn’t want to wait that long. We’re not sure how long though. I also inquired about the recovery time since she had mentioned in the past that the recovery time will be longer. She told me the last child was in the hospital for 2 weeks post-surgery. That shocked me, because I was anticipating a much longer stay. However, once again his leaky valve will likely make his stay take longer. Next month, the single ventricle team will meet and start talking about David’s next steps and when they may want to think about surgery and how to handle the leaky valve. Yet, as with everything, David is in charge and will determine the timing of when everything will take place. 

As for the rest of the appointment – David hated the echo. He pretty much screamed his way through it. I don’t know if that technician wasn’t used to performing them on babies or not, but he didn’t have any blankets out to help hold down David’s arms and legs which David finds very comforting. Nor did he have the shusher out. Midway through, when he heard me being a manual shusher for David, he pulled it out but it was too late. Surprisingly, David’s pressure gradients in his heart were lower than last week so they are not at the levels that action needs to be taken soon anymore. Hopefully he’s better able to handle his echo this week.