Cardiologist Phone Call

A couple weeks ago I got a phone call out of the blue from Caden's cardiologist. I was really surprised because we hadn't seen him recently nor did we have any appointments coming up soon. And, it is rare for him to call me on the phone. So I really was not expecting to hear from him.

He told me they had been discussing Caden's case at a cath conference and there weren't sure what to do about him. I had no idea he was even being discussed since his heart function is great. But apparently they were talking about his pulmonary hypertension when he is at elevation. If you remember, when we were in Tahoe last October, Caden went into respiratory distress most likely because of the altitude. So, we were told Caden was not cleared to fly or spend time at elevation.

For the most part this is fine. But it is kind of inconvenient because we have to drive for all vacations (which unfortunately rules out Hawaii...) and we can't go camping in Tahoe which we really enjoy doing. :( But it is a sacrifice we will make for Caden's health.

At any rate, the cardiologist said he would like to learn more about Caden's situation. Most of the cardiologists in this area have not dealt with this particular issue. But we are grateful that our cardiologist did his training in Denver at elevation so he has more knowledge in this area. That being said, he would like to do another heart catheterization on Caden and simulate him being at altitude and see how his body responds. If he has some pulmonary hypertension or goes into respiratory distress this will give them more information on how to deal with it.

That being said, it seems like an exploratory procedure to me without any guaranteed benefit. Because of that we really don't want to do it. I don't want to put Caden through another procedure unless it is necessary. The poor thing has been through so much. And caths are not without their risks. We don't even know if we'll get any useful information out of it.

So where does that leave us? With a lifetime of avoiding air travel or vacations above sea level? That is kind of restricting... So I asked what our other options would be. In talking to the cardiologist he said that since we have a pulse-oximeter and oxygen we could attempt to take Caden on a weekend trip to Tahoe and see how he responds. In October we didn't have the pulse-ox or oxygen so we didn't realize how bad off he was until it was too late. This time around we would be able to monitor his saturations and immediately put him on oxygen before things progressed. And we could drive down the mountain right away.

Our plan right now is to take a weekend trip to Tahoe June 4-6. We have a hotel room reserved and will monitor Caden with the pulse-ox the entire time we are there. Good thing it has a battery so we can actually get out of the hotel. If he still has a problem with his saturations and we have to drive down the mountain we have a Plan B. Plan B says that we will attempt one more trip up to Tahoe, this time taking Sildenafil (also known as viagra) which is used for pulmonary hypertension. Caden was on this when we brought him home from Stanford but he hasn't taken it since last summer. The hope is that maybe taking this medication prophylactically will help prevent the hypertension and allow us to fly or stay at elevation. Then he would come off of it when the trip was over.

If neither of these plans work, our last resort is to do a cath. :( Caden is just getting more aware and more anxious around doctors and I don't want to subject him to unnecessary procedures. So keep us in your prayers the first weekend in June as we try an elevation “experiment” with Caden. We are so hopeful he will outgrow this!