Fontan Postponed

For the last year or so the plan has been for Elijah to have his third open-heart surgery, the Fontan, this fall. We were all set to have a cath in June to prepare for the surgery. Monica was going to come and stay with us again and we were ready.  I should know by now that in the world of HLHS nothing is certain

A couple of weeks ago I got a call from Dr. Sklansky, Elijah’s fantastic cardiologist. He had seen Elijah the day before and the visit was very positive. Elijah’s sats looked good and he was continuing to gain weight. His echo was the same. Dion and Dr. Sklansky discussed the plan of action and we were ready. However, after consulting with the cardiologist at CHLA, Dr. Sklansky called me. It seems that the doctor at CHLA wants to wait a year before the Fontan.  Dr. Sklansky discussed his opinion about waiting and it seemed that he still wanted to continue with the original plan, but with the surgery happening at CHLA, it was ultimately up to them.

I have to say that the great thing about all of the doctors we work with is their openness and availability to the parents of their patients. After I talked with Dr. Sklansky, I emailed the doctor at CHLA with a list of questions and concerns. She replied immediately. She looked at his previous tests and concluded that it would be in Elijah’s best interest to wait. As he grows, his pulmonary arteries continue to grow distal branches which improves overall pulmonary vasculature. The Fontan relies on this and this may allow him to get a larger conduit. Waiting will also allow for him to gain some weight which can make for better post-op results. All of this to say that we will most likely be waiting until next summer for his Fontan. However, Elijah will be going in for another cath in June to evaluate and possibly dilate his stent.

I have mixed emotions about waiting. I am happy that this summer my little boy won’t be going through all that open heart surgery brings. However, there was a part of me that was looking forward to the freedom that the Fontan is suppose to bring. I have been dreading the Fontan for so long that there was a part of me that just wanted to get it over with so that we could move forward. However, I know that waiting is the best decision for Elijah. He is stable, growing, and happy right now. The longer we can keep him that way, the better.