blog postHere we are again, facing multiple paths that we can take on this whole hearted journey , just like we were when we started. We had the option to continue with single ventricle palliation, go four chamber, or compromise in the middle with essentially one and half ventricle. While it’s empowering to have options it can also instill indecision with what path to take, and fear, and doubt about that decision. At this point Eric and I both have learned that whatever choice we make for Bronson’s care we half to be confident in our decision without regret, regardless of the outcome.  The best way to gain that confidence, for us, is with research about each procedure followed by extensive discussions with the medical team, and then of course prayer to ultimately guide us. We used that same due diligence that we executed when we made the decision to risk the bi ventricular repair, that we used to decide that we are going to wait at least six months before we make the decision to list Bronson for a heart transplant. The data that was gathered from his heart catheter this past March, at Stanford, offered us the option to choose this path.

The last cath he had in Boston revealed that the high pressures in the left side of his heart from his stiff, non compliant, ventricle that isn’t relaxing enough to completely fill with blood, (medically known as Diastolic Heart Failure), had created elevated pressures in his lungs, (Pulmonary Vascular Resistance). The measurement for his PVR score in that cath was a 5, with 6 being the cutoff for his lungs to effectively withstand a donor heart. His PVR score from the cath at Stanford, is less than 2!! . Now, instead of transplant being a guarantee like we all had expected just based on the 5 alone when we left Boston, it’s now a choice. One that me and Eric feel comfortable waiting to make until we reassess his pressures again at the next cath in six months.

The team at Stanford and the team at Boston, both feel that in a perfect scenario that listing now based on the high pressures in his heart alone, excluding the PVR since it’s no longer compromised, will give Bronson the optimal outcome as long as the perfect heart became available. He hasn’t grown since he was admitted for the bi ventricular repair. His growth is significantly delayed due to the high left sided pumping pressures. That alone continues to make transplant the most desirable outcome for him. In a perfect scenario if we list him now and a perfect heart became available, he would start growing instantly. That is not a likely reality though because he has a 95% antibody risk. This means there is only 5% of donor hearts that will be compatible with his blood or a 95% risk for rejection with a donor heart. Stanford’s protocol for combatting those antibodies is an IV treatment (IVIG) to neutralize them BEFORE receiving a heart. It would entail a 12-48 hour inpatient stay once a month to administer the treatment. Listing him now would mean we’d need to start the IVIG now without any guarantee that it would work. This path is not ideal for quality of life for a toddler that adores people who’s been in semi isolation his entire life to stay healthy for impending surgeries. We feel like this is the first time we have some relief from an expected surgery. The three of us are so eager and ready to just live life!! Since we have the option to wait, we’re taking it.

The confidence for this decision came from extensive conversations with the Stanford team,  Dr. Blume, his heart failure doc in Boston, and Dr. Rhee our cardiologist here who has been the one constant participant from the start. We value him so much! They all agree that even though proceeding with transplant now presents the most optimal outcome, neither of them believe that Bronson is in any imminent danger from waiting. Since he has the Melody valve in the mitral position, we need to continue his care and follow up with Boston. Dr.’s Emani and Tworetzky are leading the trial for the Melody in the mitral position so it’s only being done at Boston. It’s important that if it needs to be expanded or any adjustments made to it that those procedures are done by the team there. We’ve already arranged with Dr. Blume that the next cath to check pressures will be in Sept with the expectation that the valve will need to be enlarged. Until then we’ll continue to do what we can at home to enhance his nutrition so we can try to get him to grow. If he grows, his ventricle grows, he gets stronger, and his ventricle has more chance to relax. He’ll also be starting preschool in August and we have our Make A Wish trip in May!!! We leave May 12 to Walt Disney World and Lego Land in FL and return May 18. An entire week of stress free fun! It’s exactly what we all need. Thank you to all of you who’ve ever donated or participated in a fund raiser for Make A Wish! We’re grateful that we get to personally indulge in the benefits of your generous contributions. I will aspire to post the pics from the trip and an update too.

 A few have inquired why I’ve left facebook. First, I personally don’t have the emotional nor mental stamina to endure anymore pain and heartache that this heart world brings outside of Bronson’s battle with Congenital Heart Disease. For me it is truly an internal struggle to balance the losses with the joys of other families who are fighting their own CHD battles. It’s too taxing on my faith and my personal perseverance. I know that I need to remain stable in my life and truly experience every moment free from external stress. Since I don’t have the self discipline to simply not check my fb page, the only way I can avoid my obsession with it is to make it inactive so I don’t have access to it. I’ve gone “unplugged” from almost all media outlets, including tv and radio… thank goodness for playlists and satellite radio! I do continue to follow fellow heart blogs and right now my heart is very heavy for two specifically that are in the trenches struggling to conquer their own battles. One is a transplant rejection and the other is a post bi ventricular repair with a valve replacement. Both of these moms offered support while I was  in the midst of our fight after Bronson’s last 2 surgeries. It’s important to me that I mention these specific warriors because both of them have offered me so much hope. They’re both valiant fighters! Anyway, I can still log on to fb and  post the link to these updates, which for now, is the only thing I’ll continue to use it for. Those of you who have my contact info have already reached out. For those who don’t, my email is tabatha95@hotmail. com and Eric’s is ericbeckphx@gmail.com. Please don’t hesitate to ask for updates at any time! We will continue to give side reports to those who ask. If we don’t update until the next cath in six months it’s because we’re loving life right now and “no news is good news”! As always, we remain grateful for all of your support. It truly helps to keep us grounded knowing that we have friends and family who have carried us through the challenges while still rejoicing the triumphs too.

Of course there are pics below:

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