February 9, 2024 – Details

A few days ago, I told Adam that David would likely have surgery February 15th or the day after Presidents’ Day since most of his major procedures have occurred the day after a holiday. He was born and had his first cath the day after Halloween. He had another cath procedure the day after Christmas. However, this time it didn’t seem likely since valentines seemed too soon and they don’t tend to do surgery on Tuesdays, but that was my hypothesis. So we had a good laugh when surgery ended up being scheduled for Valentine’s Day. 

Like I said in the previous post, I was super happy with the path that the doctors came up with for David. He will no longer be receiving the comprehensive stage 2 surgery, but instead, he’s on the Delayed Norwood route. At this point, that is the only thing that will be performed on surgery day, with an option to add on the tricuspid valve issue – it all depends on what his surgeon sees when he’s working on his heart. David will still need the Glenn surgery in a few months, but we’ll see how he handles this surgery and give him a chance to continue to grow before then. 

His cardiologist yesterday said that this is a more conservative route, but it pleased me that the were not going to try fix everything at once (since in addition to HLHS, he has a leaky tricuspid valve and the narrowing of the pulmonary vein). I feared trying to touch everything might be too much for David’s fragile body. The cardiologist also went on to explain the decision to just perform the Norwood that day and not everything else. The Norwood will make David’s aortic arch bigger (since it is very small), it will remove his atrial septum (so the stent that is currently there holding it open will be removed since the septum will be gone entirely), and it will remove his PDA stents since they won’t be needed anymore as well (will likely close that up). Additionally, it will remove the bands around his pulmonary arteries and perhaps patch those arteries if they don’t bounce back to their original size after the bands are removed. Finally, it will add a shunt to send blood to the lungs, since the aortic arch fix makes the aorta larger by combining it with the lower part of the pulmonary artery. You can read more about this procedure at this link. The hope is that his current heart stents may be causing the left upper pulmonary vein stenosis, and so they will monitor that after the surgery to see if that resolves. Also, the tricuspid valve may be a little leaky because his heart is working really hard right now to get blood sent to this whole body. So the surgeon will look at it, and ultimately might decide to leave it alone and we’ll monitor it after surgery as well. 

We were initially told that this surgery would be scheduled sometime the week of President’s day and so we would need to make a decision as to whether we’d stay in the hospital for that time or go home for a bit. There were pros and cons to each, but if David gets ill surgery will be delayed. He wasn’t going home that day though since they wanted to see consistent weight gain for more than 1 day, so we had time to make the decision. When they came by in the afternoon with the date of next Wednesday, they said David will now stay in the hospital due to the timeline. That was fine with us. We’ve begun thinking about how we can watch the Puppy Bowl and perhaps the Super Bowl on Nickelodeon since we don’t have those channels at home. We’re still figuring out how we’re going to handle surgery day with the other kids. 

As for the rest of the day, it seemed David was either happy or angry. When speech came by, it was the person who gave him his first bottle. She was really excited to see him again, and she likes to call him President Tilly because she has always thought his name is very presidential. David did not drink anything for her, but rather he kept playing with the bottle. That was a positive sign that he wasn’t hating it, and she didn’t want to push it further, so it was a good stride. 

When OT visited on the other hand, David just screamed through everything. He liked it when she bounced him up and down and gave him pats, but the moment they slowed or stopped, he let her know. 

At some point, Sarah from his single-ventricle team stopped by. We chatted about resources that could be helpful to us as parents, David, or our family – both ones that may help now and others that may be helpful in the future. She brought David a onesie from the CVICU since it is heart month. She also answered our question about what recovery may look like. She said probably 10-14 days, which was much less than I thought. He’ll go to the CVICU for a while before coming back up to the general floor again. 

The child family life specialist stopped by as well before we knew we were staying in the hospital for a while. She got a stuffy for each Eli and Anna which both have an NG tube, and a little doctor’s bag for each as well. This way, when David goes home and we’re cleaning his supplies, or giving him medicines or feeding him, hopefully they can “help” by taking care of their animal rather than trying to help with David. Since we’re not going home yet, we have not given them their animals, but they are adorable. She also brought a book about all the different ways a person might get nutrients into their body, which will hopefully help explain the NG tube (and other tubes and ports as well). 

Eli and Anna visited in the evening again. After dinner, I took them to the Endzone to play for a bit. We played hockey, hot wheels, transformers, basketball, doctors, and Eli did a cool science experiment. While I was playing with Anna, Eli and a volunteer made a dinosaur egg with a dinosaur hidden inside. They put it in the freezer for a bit and then used a syringe to squirt vinegar on it. It slowly dissolved, leaving behind a dinosaur. Anna wanted to make one then, but it was time to go.