February 3, 2024

David has had a rough day – the smiles are few and far between. If he’s not sleeping, chances are he’s screaming. He took one bottle overnight, but has otherwise refused the bottle and screams when it touches his mouth, so most of his food intake and been via the feeding tube today. Something is upsetting him – it would be nice to know what it is. He also continues to be on respiratory support. As he gets upset, he needs a little more oxygen, so it has been played with throughout the day. David did move out of the CVICU this afternoon and returned to the main floor. We are seeing lots of the same nurses who cared for him when he was there back in November, and they love seeing how he’s grown. 

This weekend  has been a little unnerving as we have no idea which direction David is currently heading. We are still in the beginning of this marathon, and you can definitely feel the direness of the situation after the finding yesterday. There have been a couple times that whoever we have been talking mentions that the finding was not ideal and continues on to acknowledges that we were not given a great prognosis when he was born so we’ve been through these situations before. It doesn’t make it any easier.

His cath doctor, who I trust immensely since he has literally given David life, kept mentioning how he’s a glass half-empty kind of guy when he was going over the results with us.  That was the first time I had ever felt a lack of optimism from him – even before David was born, he told us his mortality rate during his cath was essentially 0% since it would transfer to the surgical team if things went south (although we later learned the surgical team would not perform the surgery).

David’s anesthesiologist yesterday was another interesting lady – she knew so much about single-ventricle, and HLHS kids that I did not expect her to know. She apparently was a student under Dr. Norwood when he was at CHOP. Dr. Norwood is the doctor who came up with the Norwood Procedure which is the first life-saving procedure these kiddos go through. She seemed very knowledgable of everything going on and what everyone needed. David also had a bronchoscopy that pulmonology wanted, and I was unaware that it was attached to this cath. I knew they were thinking of one, but thought they were going to keep canceling it as long as David was not showing signs of respiratory distress. I wasn’t sure that now was a good time for it, and neither was she. She really wanted to know why they wanted it, and if it was not urgent, she was going to cancel it since David didn’t need another thing added to his plate. It was going to be a game-time decision though, and ultimately, she did cancel it. 

Although this latest finding is not ideal, the doctor today did mention that it is nothing they could not handle. The CT scan will just help guide their decision on which direction would be best for David. Sounds like there are several options, and any decision will not be made lightly. All of the folks who know so much more about this than I do, will discuss all the options. I envision that they all gather in a room and have a lively discussion and debate about why one method would work over another and why something wouldn’t work or be too risky. In the end, we trust whatever they decide because that’s a level of expertise that is outside of our realm of knowledge. Some of the options that will be discussed include: 

1. Try to place a stent in the pulmonary vein via cath procedure
2. Adding it to the comprehensive stage 2 surgery
3. Going ahead with the delayed Norwood and adding it to that surgery
4. Transplant 

I had inquired about a transplant and if the pulmonary veins are part of the transplant or if those narrow veins would still need to be dealt with, and she said that is really a question for the surgical team. However, most transplants try to use the pulmonary veins a patient already has since they are super finicky and throw huge tantrums if they are even slightly touched. So it sounds like a transplant will not solve the new issue. 

There are probably more options, but those are the ones I’m aware of at the moment. In addition to the normal single ventricle surgeries, we now have to deal with the leaky tricuspid valve and the left pulmonary vein stenosis. This is definitely not ideal, and not where we expected or hoped to be. David loves to throw curve balls  

His nurse in the ICU today was telling him how everyone knew he was coming and had no idea what to expect when he was born. She said she was reading research papers about nutmeg lung trying to learn more about what his stay may look like. I remember a different nurse mentioning a similar thing. No one on the unit had heard of nutmeg lung until he was coming, and everyone feared the worse for him. However, David came in strong, and said you were all worried for nothing. 

Tomorrow my biggest goal will be to try to get David to eat orally again. Hopefully he also has an easier day.