Archive for July, 2013

Back To Rehab

We came to Boston in pursuit of a four chamber heart. Along with this came some… well, naivete. Naive in the sense that a four chamber heart would mean we would be as close as we could be to “normal”, since two chamber hearts aren’t… normal. Two chambers are indeed capable of  not only sustaining life, but can even provide a great quality of life. Since we’ve began this bi ventricular journey, we’ve learned that four chambers does NOT in fact promise a higher quality of life than a two chamber heart. A half of a heart that has never been whole requires alot of rehabilitation (in Bronson’s case). When we left Boston from Bronson’s second surgery we had the expectation that the only rehab the left side of his heart would need to become functional is more size.  Grow the necessary parts on the left that were too small and then just connect them to the right and SHAZAM… A WHOLE HEART! Not how it works. A newly whole heart that has never been whole requires alot of training and exercise before it’s ready to regulate an entire body. Sometimes, even with maximum conditioning from worldclass trainers (cardiologist and surgeon from the top hospital), four chambers still can’t manage an entire body without failing. Heart failure after biventricular conversion from single ventricle circulation is a very realistic risk with Bronson’s anatomy that Dr. Tworetzsky and Dr. Emani both had to calculate carefully before they made the decsion to move forward with the repair now, or wait.

His heart is exactly on that fine line to convert or stay single ventricle. Half of the data from the echo, MRI, and catheter support conversion. The other half of the data suggests that we wait and see. His ventricle and his mitral valve have both grown significantly enough to support a four chamber heart.  In the cath. lab Dr. Lock found two collateral vessels that had the effect of pumping extra blood down the left side.  While they helped the left ventricle grow, they could put Bronson’s body at more risk of internal bleeding so they closed them off.  The mitral valve has grown pretty good and is keeping pace with his body but is leaking blood back into the left atria (about 25% ).  Inside the newly grown left ventricle the muscle mass is still just a little thin and can certainly use a little more time to bulk up before we try to make carry more than the 75% of the load that it has been.  Dr. Emani and Dr. Tworetzsky also felt that his diastolic pressure was just a little higher than they would like (he’s at 14 and they want him at 10 or preferably 8).  They said that if that pressure was 10 they probably would have continued with the surgery now.  At this point, with all of these factors considered, we are better off to let the boy grow.

We are coming home with a more aggressive approach to rehabing the left side. They are changing  his medications a little.  Furosimide (a diuretic) is going to be 3 times as much, and enalipril (sp?) (to lower blood pressure) is going to be “a medium dose” for a boy his size.  We will be going to quarterly cardiology appointments in Gilbert with Dr. Rhee and an echo in 6 months evaluate progress with this new plan.  At this point our understanding is that we’ll be back here next year for surgery. just not sure if it will be for the 4 chamber or to complete the single ventricle circulation. When we come back Bronson will need a new mitral valve (there are several options of different ones) so him being bigger makes that decision a little easier to make for Dr. Emani.  If he can go 4 chamber at that point, we’ll GO FOR IT!  If the 4 chamber won’t work for him then Boston will do a “modified” Fontan (final surgery to complete single ventricle circulation) that would utilize this big beautiful left ventricle. We are sure that he would do great with that circulation.

So with all that said……..we go back to waiting.  It is is still a small dissapointment for us.  We came to Boston this time ready for the fight and armed to conquer all of the risks involved with a whole heart repair.  Tabatha does such a great job of growing and keeping our little boy healthy for the next inevitiable surgery and she gets to keep doing it.We were just expecting to bring him home with some closure to BIG open heart surgeries. There will NEVER be a guarantee to the end of surgeries though.  As it is we bring him home in the same state that we left in, HOWEVER, we have a great new understanding of what his body has been doing with the modifications that Dr. Emani made to grow his left side.  And we are bringing him HOME!  It will still be a bit of work but with the adjustments to the rehab of his heart we are back to having high expectations for next year.  Tab has equated all of this to an appropriate analogy of training for a marathon. We just completed a 5K so now we have to get back to training (exercising the ventricle) and work to make sure Bronson is ready for the main event. A whole heart!

While We Wait…

We are still waiting for the team (the cardiologist, surgeon, and catheter doctor) to collectively review all of the data from the procedures yesterday, before they determine if they will move forward with the four chamber repair. Meanwhile, here are some pictures from our time at the Yawkey house, his first day of clinic tests, and some before we turned him over for his heart cath.

We Made It!

IMG_20130712_183617  We’re here at the Yawkey House in room 38, right next door to our room from our first stay- room 37. All of us, including most of our luggage, arrived together… EXCEPT for Eric’s bag. It was originally deemed lost… and NOT found by the lost luggage desk at the airport. This morning I called the main line for lost bags and was delighted with the news that it is actually in route for delivery. Eric’s planned shopping spree has been canceled. He’s quite happy about it!

We’ve been endulging in our time with the Bronsonator with strolls through the neighborhood and relaxing around the house. Currently the weather is a luxurious relief from the hellacious hundreds we escaped from in Phx. We have been informed though to expect a  humid hell here by next friday, scheduled surgery day. That will probably result in a 20 minute cab ride to the hospital, instead of a 10 minute stroll. Bronson has adapted wonderfully. Last night, at about 8pm AZ time,  he climbed (in true BEAST fashion) into his crib with absolute resistance to any help from us to assist him. Those of you who know… the GMa’s… helping him can create instant chaos in his very serious 2 year old world in which he has conquered! Even though we’d like to avoid alternate surgeries for anything other than heart repairs, we’ve relinquished our ability to helping him climb in and remain on standby ready to catch. Currently, he is napping and Eric is too… a common scenario for the three of us! Below are some pics of our non adventure so far. ENJOY!