First things first is the reminder of the purpose for this blog. We had a cardiology appointment today. My head is still kind of spinning from it, so I'll do my best to touch on the important points. I was anticipating a very quick and routine appointment (this was just our regular 3-month appointment), so this all kind of came out of the blue.
We met with both of our cardiologists, which is something we used to do all the time but haven't in almost 2 years. Apparently Ethan has progressed from Stage 2 heart failure to crossing the border into Stage 4 heart failure. His body handles his heart failure very well though thankfully, so at least we are not in any sort of emergent decision-making situation right now. The docs did say we have hit the time to discuss surgery.
At this point in time there are two surgical options they are discussing. One is open-heart to replace his conduit with the intention of allotting for many more years of growth. This is the least risky of the two surgeries, yet the one that will provide the least overall benefit. The other option is extremely risky. It is also open-heart and is the thought of separating his heart into chambers. The intention of this is to give him the proper anatomy and fixing his transposition. There are TONS of questions about this surgery and we have no idea if it is even possible. They will be discussing all the different ideas and thoughts about how to create this to make it successful.
The next step is to do an MRI. They will use the imaging from the MRI and create a 3D printed image of Ethan's heart! I am very excited to see a 3D model of his heart, so that is really cool! They will use the model to present his case at their cardiology conferences. All the cardiologists and surgeons from our hospital and a collaborating hospital will discuss his case, give ideas and thoughts, and determine whether this surgery is even possible. Whatever they decide between the two options, or any new options that present themselves during these discussions, is pretty much what we will stick with. John and I will still have the final say as to which option we go through with, but honestly we have no idea yet.
Ethan is also wearing a holter monitor for 24 hours. We were supposed to do this in the fall, but schedules conflicted with the monitor availability so we were pushed back to now. Hopefully we get good feedback on this monitor and no problems arise.
Ethan will also need to have more bloodwork done at his next round of monthly labs. We also need to finalize his dental surgery. He has multiple teeth that need worked on. We are not sure if his oral issues are due strictly to his medicine or his heart in general (many heterotaxy and heart kids have dental issues). Because he has a lot of work to be done, he will need to be put to sleep for the procedure. Hopefully we can get this scheduled and taken care of quickly and with no problems.
Ethan had bloodwork done today for his INR check. His level came back low. He was 1.6 and we are aiming for 2.0. We don't know why he dropped from his last check at 2.1, but we'll just keep monitoring and hope it goes back up. If not we may have to consider increasing his Coumadin dose again. He did amazingly well for his labs though. Today was the first day he ever sat by himself and not in my lap for a blood draw! He still held my hand, but was so incredibly brave and is very proud of himself! And a highlight of the appointment was definitely Dr. Z's cookies! :)
Please keep us all in your prayers. There are some major decisions that have to be made and I can only pray for the right choice. We even have a new surgeon added to the team, so our docs have to decide who will actually perform the surgery too! It's incredibly stressful, but I'll just try to focus on one step at a time. Our doc said that he likes summer surgeries best, so this summer would be the aim. In the next two weeks we meet with three other specialties (neurology, pulmonology, and psychiatry). Lung-wise I am under the impression we are doing fairly well, but we have lots of issues to figure out with neurology and psych. Lots of prayers are needed, so that would be greatly appreciated! I will update with our appointment results, and I'll get a "moving" update posted sometime soon too!
