Transplant 4

In January of 2023 we first heard the word transplant.  I had always hoped it would be much later down the road.  But we had been hearing about signs of failure for awhile, and I suppose it shouldn’t have come as quite a shock as it did.  But when we were finally ready to list her for heart transplant after all the testing and evaluations, her liver testing showed that her liver was also failed possibly beyond repair and she might be looking at needing a dual transplant. It was very devastating news. There are only a handful of successful dual transplants done in the US each year, and it is still relatively new. PCH had never done one, so we were looking at having to go elsewhere for it.  So we decided to transfer over to Stanford medical center for a second opinion.  They also agreed that their initial findings did not look good and she needed to be dual listed.  We started trying to understand what this meant for our family, and decided if we were listing and waiting at Stanford, we were all going.  We would stay together.  It was our son’s senior year, but he was incredibly good about it.  But on our second visit in October, we had a surgeon say he thought he could help her liver and possibly save it.  At the very least, it would make her stronger while she waited.  Dr. Thakor.. one of our many heroes.  She was scheduled for surgery in December of 2023, and it was exactly what she needed.  In fact, when he got in there, it wasn’t as bad as things had seemed, and he was able to get much better blood flow to it by banding off some large varices that had formed. I still don’t even fully understand it. Two of the best teams in the world decide after lots of tests that her liver is too far gone and she needs a dual transplant and then, after a 2 hour procedure, it was going to be fine.  Something I must mention about this miracle is that our ward fasted and prayed for Bela just prior to us going to Stanford.  That is something we do in our church to show our collective faith and ask for special blessings and help. I sometimes don't know what God needs me to do with all these miracles he has given to our family.  This was not the first time our church community had united in fasting and prayer for Bela. I have no doubt that miracles are brought about by it, and I will forever be grateful to those that united with us and believed.   

Incredibly grateful, we came home, celebrated Christmas at home, and were listed on January 5th, 2024 for ONLY heart transplant here in Phoenix.  I know we were supposed to see that team at Stanford.  Dr. Thakor’s eyes were supposed to see Bela’s images, he was supposed to intervene for her.  Now that all is said and done, I don’t know that Bela would have survived heart/liver knowing what she just went through and how long her heart transplant took.  God knew, and he sent us on a detour. I was absolutely devastated for about 6 months thinking she would need dual transplant. But He was there ALL ALONG, guiding us to where and what she needed.  I just couldn’t see it then.  

We waited 10 months from home and then 5 weeks inpatient.  I’ve already recorded the events of the day we got the call that a heart was found. Heaven was near from the very start.  

I felt such a sadness strike me for what a family I didn't even know were going through.  What a connection to have with someone 'out there'.  Not a day has gone by since, and I'm sure not a day will ever go by, that I do not think of them.  

Bela was very calm all day Thursday.  She came to this earth calm.  Calm and steady.  Faith and trust come so easy to her.  I’ve always felt that because God knew what she’d have to do, He blessed her with everything she needed to do it.  I think that’s always true, it’s just very very easy to see in her.  We have always followed her lead and tried to match her calm.  It’s such a gift. If you know her, you know.  She doesn’t get worked up, doesn’t complain, doesn’t sweat anything.  She got wheeled away from us with her pre picked song, “Seize the Day” from Newsies playing.  SO her. 

To know your child's heart will be stopped and removed is unnerving to say the least.  Her heart died that day on that operating table.  I felt sad about that.  Its such a whirlwind of emotions.  I don't understand it all, mabye no one fully does, but there's always talk about the 'heart', and I wondered how much of who someone is, their personality, emotions, essence, aura might actually be from their heart.  Or if it's all just a saying. I wonder about that a lot. I didn't want one thing to change about Bela.  And I appreciated and loved her heart for all it had endured for her--and simply because it was hers.  I am so grateful that the miracle of heart transplant exists, but in those first hours, that was was I thought about. When asked by my little Oliver where Bela's new heart came from, the child life specialist simply said, "it comes from someone who doesn't need it anymore, and once it goes inside Bela, it's hers." He was satisfied with that answer, and I was also very grateful for it. Sometimes simple is best. 

 

Here are the updates we got during that night.  

Not a whole lot.  But I can get an idea of how long they worked on her anatomy before being able to even start placing the new heart. That’s why there was concern over the heart being okay, because they didn’t anticipate the length of time it would be ischemic.  Her anatomy was changed during her three surgeries to bypass her left ventricle that was non-existent.  So all that previous work had to now be taken down and put back to normal to attach it all to a new, normal heart. Also, when he got in there he realized that her aorta and pulmonary artery had fused together so he had to separate and rebuild both. It becomes a race against the clock, the heart has to go in and start beating. I think the hope was that the pressures would be okay with what was done.  

The first update from the surgeon was great and we felt elated.  But pretty quickly they saw the problem with the right side of the heart. It was struggling against the new higher pressures out to the lungs. The connection point from the donors pulmonary artery and hers narrowed significantly because hers were so much smaller, and the heart wasn't used to pumping through those pressures. They had to put her on ECMO.  Our room wasn't large enough to contain all the equipment being utilized and we spilled out into the hallway. 

Watching her team of nurses work on her that day was something to behold.  Her ECMO nurse was Miranda and she called Bela ‘baby girl’ and worked SO lovingly with and on her.  Talked her her, told her she was safe, just gave her absolutely incredible care. I always want to remember her.  Her day nurse during the critical 3 days was Jessica, night nurse was Lauren, also both amazing. She kept them working non-stop. We were definitely the crazy on the floor for those 3 days. There’s times when you feel so completely helpless, absolutely nothing is in your control, and those nurses are your seen angels. They are my heroes. 

That was a hard day. I was terrified of ECMO, whether that was the right way to feel or not, that's how I felt. I was also terrified of her coming back with her chest open. I just had never had to deal with that yet so it was mostly the unknown.  And seeing her, for me, was crushing. More so than I anticipated. I had done this before. But I was absolutely overcome with sadness.  Don't know how else to describe it. 

At that point they just kept telling us that her heart and body just needed more rest, and we clung to that hope. They said the heart was strong and I believed that.  After that second night I was totally confident she’d come off ECMO in the morning.  She didn’t handle it for even a few seconds. This was Saturday.  We told ourselves she just needed more time. But Sunday she couldn’t handle the wean either. Oh we were so hopeful that morning, and that was a heavy blow. All that night she had been working so hard to wake up over the sedation. It’s rare for someone with an open sternum and on ECMO to be that awake.  It was a very hard few days..she wanted to be done being that way but was nowhere near ready yet because of the issues with her heart, that we still didn't understand.  We kept telling her she just needed to rest.. she did not want to rest.  She doesn’t remember anything from those days, thank goodness. It's bizarre, in the moment she was very much aware and needing to be comforted, yet doesn’t remember any of it. 

The doctor on that Sunday felt like it was time to get more information and started talking about sending her down for a CT scan.  On ECMO!  It was going to be a 4 hour round trip for a 30 second image.  I was kinda mad about it actually, it seemed like so much effort to put her body through, and although I felt the worry, at this point I don't think I was capable of truly acknowledging that she had a bigger issue.  But he was the first Dr. that was pretty adamant something needed to be done and needed to be done now, and we began to realize what it could mean. He happened to be the Chief physician, and only works as an attending on the cardiac floor a couple times a month, since he was over a couple ICU floors. Another thing I don't think was a coincidence.  And so they made it happen.