Kaleb Prinz: Impossible Choices

So much has happened with Kaleb in the past couple of months. We spent 5 weeks in Baylor Our Children's House Inpatient Feeding Program, and it was hugely successful. Our lives have taken on the completely new normal of Kaleb EATING 4 times a day. Yes, it's his thickened formula as a drink and a food, so it's just the beginning. But when you consider he started the program eating NOTHING....in fact, pushing absolutely everything we tried to feed him out every time, or just plain refusing to eat...it's amazing progress! He is improving every day, and although I have to remind myself "it's a marathon", it's pretty amazing to successfully feed our kiddo. I'm so proud of my baby, and I can't wait to see what he does next!

That's one of the many reasons this next part is so important. This weekend we're going to Boston-Boston Children's Hospital specifically. You see, back in September we had a Cardiology appointment with Dr. Nugent at Children's Dallas, and we started talking about Kaleb's next surgery. It wasn't a subject I was emotionally ready to start thinking about, but it was necessary. At that appointment, Dr. Nugent made it very clear that he and Dr. Forbess(Kaleb's surgeon) see Kaleb's future with a single ventricle heart. This wasn't surprising information, because he's really been on that path since the beginning-and we were thrilled to be on it. It was just a little disappointing because there had been talk of a 2-ventricle repair, or if that wasn't possible, at least a 1.5.

Single ventricle heart kids have a series of 3 operations that are considered palliative...they don't fully repair the heart, but provide a unique circulation that makes life possible. He has had the first 2 of that series, and at this cardiology appointment in September, we started talking about the 3rd and final surgery. To be honest, I had only just started looking into it at that point. I was genuinely surprised to find some really terrifying information regarding quality of life, complications that lead to transplantation, and life expectancy. I knew it wasn't a full repair, but somehow I just always imagined it was safer.

After that conversation with Dr. Nugent, I started reading everything I could find on the Fontan(the name of the 3rd surgery in question). A lot of the information that I found came through a group I belonged to on Facebook, called the Heterotaxy Network. Heterotaxy is Kaleb's main diagnosis, and the group consists of the parents of Heterotaxy kids all over the world. The Heterotaxy Convention had just happened, and I read everything I could. Dr. Pedro del Nido, a heart surgeon from Boston Children's had given a presentation, and I was only able to read the PowerPoint. One of the things he stressed was, "The best chance for long-term survival is the aggressive pursuit of a bi-ventricle repair." 2 ventricles....it really stuck with me.

What if it was possible for Kaleb's heart to be fully repaired? Dr. Forbess said it was possible, but in his opinion, not his best option. I started thinking about how final that 3rd surgery was going to be, and I couldn't stop thinking about the possibility of a 2-ventricle heart. So I contacted the amazing mother of another Heterotaxy kiddo and huge supporter of Boston Children's, and I asked her to help get us in touch with Dr. del Nido. I never dreamed he would personally contact me, but when he did, our pursuit of a 2nd opinion from Boston Children's was in motion.

It's been a couple of months since the first email, and Dr. del Nido's team has reviewed all of Kaleb's cath pictures/reports, echos/reports, surgical notes-everything but Kaleb himself. They have preliminarily determined that a 2-ventricle repair is POSSIBLE, and they want to do further testing to confirm this opinion. We're going this weekend to give Kaleb this chance.

No decision has ever been harder. We love Children's Medical Center, Dallas. They gave us Kaleb, when no one thought it was possible. Dr. Nugent, Dr. Forbess, their teams, everyone in the Heart Center has saved Kaleb's life so many times, and we're more grateful than we could ever express. We truly believe there is no better place to take a child with complex heart disease, and there is no reason we would ever want to look anywhere else for Kaleb's treatment....except that they have already decided his future. A single-ventricle future.

We just have to know, without question, that this path is the best we can do for him. It may be. When Boston's testing is finished, if they recommend a single-ventricle path for Kaleb, we will gladly accept it and do what we've always done...everything we can to make Kaleb's life the best it can be. We will get him the Fontan, and be prepared for whatever comes next. Kaleb's always made his own path. The statistics are just numbers that we can choose to give meaning, or we can continue to have faith that there is a bigger plan for our little boy...as we always have.

But what if they say it's possible, and are confident of a good outcome? What if Kaleb's heart can be fully repaired? It would mean a totally different life for him. He would have a heart very much like ours....with oxygen saturation close to 100. That's 22 points higher than it is now while he's at rest-much more when he's moving around! It would mean running without tiring....playing little league...no heart transplant in his future(hopefully)...much better GI function that would hopefully lead to being able to take more food by mouth...the possibility of a longer life with less medical intervention. It's a beautiful possibility. And who wouldn't hope for that?

Years from now, God-willing, we will tell him the amazing story of his special heart. It's important to us that we're able to tell him that we did absolutely everything we could to make his life as long, healthy, and happy as possible. If we never fully research and explore the options for this last surgery that determines the rest of his life, how can we say that? So we go to Boston this weekend, and we're praying for the answers that will lead us to a decision about the best surgical path for Kaleb.

His testing takes place next Tuesday morning, and we'd love everybody who has one to wear their Kaleb shirts. Prayers for his safety during the procedures, the skill/wisdom of the Drs and nurses, and for a surgical plan that leads to the best possible outcome for Kaleb would be greatly appreciated. I don't know why, but I am especially terrified for this trip. Maybe it's because Kaleb's heart has been incredibly stable for more than a year now, and I have been truly enjoying our time at home. We've celebrated so many milestones: scooting, pulling up, signing, heart surgiversaries, walking, talking a little bit, expanding his love for learning and Handy Manny, his 2nd birthday, and starting to eat by mouth-each one such an incredible gift. Even though there are daily reminders that life isn't perfect, I've loved every minute of this time with him. And I'm not ready to hand him over again...once more into the unknown. I'll never be ready. It feels too soon, and yet, I know we are beyond blessed to have this opportunity. Tomorrow, I'll put on my "Big girl panties", and no matter how scary it gets, one look at Kaleb will remind me how important this is. Look out, Boston. Kaleb's coming to town.

Now more than ever....
One day, one hour, one minute at a time,
Jenifer