December 15, 2023

Things have been going fairly well with David and his diagnoses that it was probably time for some humbling news to bring us back down to earth. This morning David’s cardiologist called and she wanted him back in clinic today. The echo results from yesterday were not what she wanted to see so she consulted some of her colleagues to get their opinions. Basically, there were a bunch of unknowns and they wanted to see David again right away to get some more information before the holidays. So back to the cities we went for another echo, an x-ray, and more labs. 

We started the day with the echo. They were not going to mess around, and brought in their best echo technician to perform the procedure. My task was to keep David as calm and relaxed as possible. I tried to make sure he was nice and full before we left the house and then hoped he would sleep through the procedure. Of course David was nice and alert this whole day. They started by trying to perform the echo while David sat in his carseat. He quickly grew agitated, so we pulled him out and ultimately ended up swaddling him. David had a few moments of agitation – more than yesterday, but I think they were able to get the pictures they needed. It took a while and I learned later they were trying to create a 3D image of his heart. They really want to find the source of that unknown flow and determine why it is so much more than last week.

Immediately after the echo, we were brought down to get some chest x-rays. The cath doctor wanted these to examine one of David’s stents. He said the elevated pressures could occur if the stent became fractured. It sounded like it did not appear to be fractured on the image, but the main cath doctor was busy in the cath lab performing a procedure on someone, so we were still waiting on a final word from him. If it were fractured, they would want to repair it before the holidays next week.

After the x-ray it was time for another lab. They realized they should check David’s hemoglobin levels. If they are too low, it could also have an impact on the pressures (if I’m remembering correctly). The hemoglobin levels tend to go down in all babies around 6 weeks. Since David is a cardiac patient, they like to try to keep that number higher than they would if he were a normal baby. If his hemoglobin was too low, it sounds like they would look at ways to get him more iron (maybe I’ll have to try to find a way to keep that multivitamin down) or perhaps a blood transfusion which they would like to avoid at this time. These results were not back by the time we left, but it looks like David is on the higher end of the acceptable range, so hopefully he’s ok for now in that regard. 

Before we left for the day, they wanted to make sure we met with the cardiologist to talk about what she saw on the echo today and what are steps are going forward. It sounds like that extra flow is from the tricuspid valve. What this means is that the valve between the right atrium and the right ventricle is not working properly, which in David’s case is a big deal seeing as his left side of his heart doesn’t really work at all and the plan was to make his heart into a single ventricle heart which really only uses his right side. The fact that there is an issue with the right puts him at a higher risk. His cardiologist is going to call a meeting with all the brightest minds to try to figure out the best path forward for David, and we should have more answers about what this is at his appointment next week. Essentially though, it seems like the options are

1. delayed Norwood procedure – however this doesn’t touch the area of this valve at all so it won’t fix this valve issue
2. comprehensive stage 2 procedure – but David is still much too small to go this route – I’m also not sure if this would fix that valve issue
3. heart transplant – it seemed as though this might be the way they will decide to go for David, but she didn’t want to commit to that at this point

So for now, we hope the doctors have all the information they need to make some decisions on David’s future. She apologized for not having great news, but honestly at this point, nothing really phases us because we’ve already been blessed with so much extra time with David that we never thought we’d have. He’s been able to come home and feel the love everyone has for him. For a little boy who is so sick, he’s consistently overcame the odds which is exactly the kind of fight they need from these kids. In fact, it seems as though David should not be doing as well as he is with his saturations based on what they see. We’ll probably have more questions once we know the plan forward, but for now we’re just going to try to enjoy this holiday season and hope David continues to do well and stay home to celebrate his first Christmas.