Check-up at the Cardiologist

Friday, November 7, 2008

We had a check up at UAB cardiology. Jack weighted in at almost 18 pounds and his oxygen was holding strong at 92%. Dr. Pearce could not get over how great Jack looked and how “balanced” his little body continues to be. He reviewed with us the dictation from Dr. Breitbart in Boston and we discussed the heart catheterization procedure. Dr. Pearce believes we can wait until January to have the procedure done. He also informed Brian and I of the risk factors associated with doing the heart catheterization. There is a 5% chance that Jack could suffer temporary and/or permanent heart block due to the fact that his vessels are bent the wrong way and are in funny places. If heart block occurred and it did not correct itself then Jack would have to get a pacemaker. I was shocked at this. Now, I know that with any procedure there are risks, but I guess I had no idea that my 4.5 month old child, who is doing so great despite a messed up heart, could have to live with a pacemaker because of a simple procedure. Now, I don’t know if I want the procedure done at all. I have really been thinking and praying about it and I just don’t think I want to risk the odds of something happening. The reason for the heart catheterization is to measure the exact pressure of the pulmonary artery to say 100% that Jack can skip stage 2, the Glen procedure, of the heart surgeries. The grey area comes in because even without of the heart catheterization, Jack would be skipping the surgery because he is showing no signs of needing any intervention at this time. Rather we do the procedure or not...Jack will not have the stage 2 surgery done unless he begins to show signs of congestive heart failure. The stage 2 surgery is usually done around 6 months of age to enable a child’s heart to remain healthy until the finally surgery (Fontan procedure) can be done between 18-24 months. As long as Jack keeps progressing like he currently is...the stage 2 will be skipped. If at some point, before he is 18 months old, he begins to show signs of heart problems then the Glen procedure will be done to give him some more time before the final surgery is done. Given all of this I don’t see how doing something now that could cause Jack to have a pacemaker is going to change our plan of care. Brian is going to send Dr. Breitbart an email and ask if we have to have the procedure done. I want to know if there is a piece of the puzzle that I have missed. I just want to do the right think for Jack, and I do not know what that is right now. But I am leaning toward not having the procedure done.