Dispatches from Boston

We had our 1 year post surgery check up in Boston at the end of September. Jake's echos had stayed stable following his last Cath in February, and he has just been soaring at home, so we were expecting good news. Still, there's always that brief moment of panic I feel just before they tell us the results. If Jake's behavior is any clue to how's he doing, I should have known we have nothing to worry about.

It's always nice to see Dr. Tworetzky. He just has a way at putting us at ease. Jake certainly seems relaxed with him.


Dr. T. had two fellows with him who were interested in the fetal intervention and we got a pretty thorough update on it from his explanations to them. Jake was the 14th two ventricular birth in some 5 years of doing the FI. They now have 20 successes. I'd say they're getting better at doing it and that number of successes is due to increase steeply as they do more and more FIs.

Dr. T. illustrated some key things that they learned specifically from Jake's case, including that they need to give these baby's time for their heart function to improve. We were just about ready to have the Stage 1 Norwood surgery which would have joined Jake's ventricles, giving him the traditional HLHS anatomy. However, that plan was thwarted when he came down with Sepsis (a blood infection) in the ICU. We needed to wait until the infection ran it's course and the antibiotics did their work before he could have surgery. Fortunately, by the time that happened, his left ventricle was pumping enough blood to indicate that it might be ok without the HLHS surgery. However, we would be back for the EFE surgery (see early posts).

Hearing Dr. T. explain Jake's case to these traveling fellows drove home the point that this treatment is still so new, so cutting edge, that they don't even have enough experience or successes to predict outcomes. This is trailblazing medicine and we are on the front lines with them.

But I digress...

Jake went to sleep for his echo, thanks to the sedative, so that they could get the most accurate pictures of his heart possible.

Dr. Lock and Dr. Del Nido made brief cameos in passing. Sadly, both Linda Zaccinini and Donna Morash had the day off, and we did not have the pleasure of bumping into Dr. Marshall.

We stayed at the Yawkey House - which is kind of like a Ronald McDonald house for families. It was nicer than most bed and breakfasts we've stayed at. We were also fortunate to run into Mary Beth and Anne Louise Atherton, Jake's roommates in the step down unit from his first hospital stay.

All in all, it was a good trip. Jake's heart has stayed stable since his catheterization from February 09 and we will not need to return to Boston for another cath in 6 months. We are so relieved and as long as everything stays stable, we can count on being home for a nice long while.