Big, Unexpected News

The teams from UCSF and UCD had their teleconference this morning. I knew they were done by 9:30am, but I forced myself to wait to call the cardiologist until 1:00. He said there were a lot of people discussing the case and that they had all pretty much come to a consensus. They want to postpone surgery for 6 months to one year.

The reason is that the cath showed the pressure in Drew’s pulmonary artery to be a little high. The way his heart is now, the blood from his head and arms passively flows (via the SVC) to his pulmonary artery. If they do the Fontan the blood from his lower body will also passively flow to his pulmonary artery (via the IVC). This would create twice the flow and possibly twice the pressure. If the pressure is too high it can cause swelling in the face and head and fluid to accumulate in the belly. This makes the Fontan a higher risk than is typical.

So the question is can they do a two ventricle repair? It seems that everyone wants to, but just as I suspected, they won’t know for sure until they are in the operating room actually looking at his heart. If they do the two-ventricle repair his heart would function as a normal heart does and he wouldn’t have problems with the pressure in his pulmonary artery.

Since the only two options are Fontan or two-ventricle repair and they won’t know until they are in surgery, they want to lower the risk of doing the Fontan if it ends up they have to go that route. There is a medication that can decrease pressure in the lungs. They want to give Drew Sildenafil (yep, that’s Viagra) for 6 to 12 months to see if it helps. Then they will do another cath to see if the pressure has decreased. If so they will proceed with surgery, hoping to do a repair, but better able to do the Fontan if necessary. If the pressure hasn’t decreased, they may elect not to do surgery at all.

We have an appointment on Monday to discuss the side effects and risks of putting Drew on Sildenafil. If we decide to do it they will give him the first dose in clinic and we will have to wait 3-4 hours while they check his blood pressure every twenty minutes.

So, I’m not sure how I feel about this news. At first I was upset. I’m already anxious, I’m getting myself all geared up for surgery and now…we wait? And then we’re going to have to go through all of this again in 6 months or a year? I’m nervous when they say if the medication doesn’t work they may decide not to do surgery. I’m nervous that his blood pressure is already low and that the medication may make that worse. And I’m hoping that our insurance will cover Viagra for a kid because I read that it costs $35 a day.

On the other hand that will give Drew more time to grow, Ava will be older, and we’ll be able to go to all the weddings and graduations we have planned in June. And in my internet research on Sildenafil in children it says that it can increase their endurance and ease their breathing. Drew definitely gets tired much quicker than his friends. It would be nice if he had more energy to run around and he didn’t have to breathe so hard. And I am really pleased with our team of doctors because it seems like they are really considering all the options and trying to find the best treatment for Drew. I like that they really want to do a repair, but instead of just trying it, they are taking all the precautions necessary so that he will do well no matter which surgery they end up doing. And even though we are going to have to gear up and do this again in a few months, I do like the idea of not worrying about it for a while and just having a normal summer.