September 29, 2023

Today is world heart day, so it seems fitting that we try to write up what we learned since we last updated. 

Last Friday, we met with the surgeon, a child family life specialist, and then a member of the cath lab team. The person from the single ventricle team was unable to make it. It was a long day with a lot of waiting, but we understand that other patients have more pressing needs than us at this point. 

When we met with the child family life specialist, we asked a lot of questions on how best to approach our situation when explaining it to Eli and Anna. She was very helpful and gave us an idea on how to bring up the subject with Eli and even gave us a book to read with the kids. We had also seen a different child and family life specialist last Tuesday during our tour where we started our conversations and she mailed us out a couple books which arrived on Saturday. We have since been rotating the 3 books in our bedtime routine to start to introduce the topic of being separated from mommy, what it’s like in a hospital, and the function of a normal heart to Eli. 

We also met with the surgeon. He explained the initial procedure to us again with many more details, along with what to expect after the procedure. In the best case scenario, he won’t be involved initially, but he’ll be there in case he is needed. Our hope, is that he won’t be needed, since that would mean that the initial procedure did not work. He also told us, we will need to be very patient as we wait after the procedure to see how well David’s body responds to everything. 

We also met with the cath lab cardiologist, who also explained exactly what his goal and plans are for the initial procedure, along with the risks of the procedure and different routes that might take place in the event of different scenarios. Basically, his first job is to try to decompress the left atrium with the breaking open the restrictive atrial septum, placing a balloon to hold it open, and placing a stent to keep it open. David’s heart will approximately be the size of his fist, so it’s a very small target, and not an easy procedure.  If this procedure is successful, his next step would be to use a medtronic device to put into the pulmonary arteries to control the flow of blood to the lungs (we want to balance the amount of blood heading to the lungs with the amount of blood heading to the rest of his body). This device has been FDA approved, but not for this purpose – however, they have used it for this purpose in the past and will continue to use them in the future. If all of this is successful, then we’ll be in the waiting game of seeing how David is doing before next steps are discussed. 

However, there are various things that could go wrong during this procedure. The cath lab doctor is hoping David gives him an hour to get the above procedure completed. If David does not give him an hour, then the surgeon will become involved, and David will likely be put on ECMO initially to keep him alive, which the procedures are completed. ECMO is a heart and lung bypass machine. There are other reasons that the surgeon may need to get involved as well, and that would be if the attempt to create that hole in the left atrium failed – either it punctured the wrong part of the heart, caused other bleeding, stroke, the stent didn’t hold, etc. As soon as the surgeon gets involved, David’s chest will be opened up, which brings with it a host of other complications. The surgeon will place bands on the pulmonary arteries rather than using the medtronic device, and likely won’t be able to close up his chest with all the extra fluid that will be present due to the nutmeg lung.

We hope the initial cath procedure is successful and that the surgeon is on hand, but is not needed. The cath lab doctor did explain that they have plans for all the different scenarios that could play out, and that they will be prepared for all of them. He also said that the mortality rate was essentially 0 for this first procedure, since if anything goes wrong, David will be placed on ECMO which will keep him alive. 

Since Friday, I have had my weekly ultrasound bio-physical check (which we’ve been getting since the beginning on August). David was napping hard at this ultrasound and it took him a while to get his movement points; however, once he finally woke up (accompanied by a big yawn), he got 8/8 points. So far, he’s still doing well, which is good because he still has some more developing and growing to do. The larger he is, the larger his heart will be, which makes these procedures easier.