Gerold, “G”, what a wild, spunky, fun loving little guy! Never in a million years would you guess he was waiting for a heart transplant. He doesn’t know that he is sick, just knows he has different obstacles in life that he is needing to adapt to and work with.
Amanda and Joshua were foster parents to him since he was nine months old. They loved him instantly and never suspected their life would take such a dramatic turn because of the desire they had to make him their own. Amanda shares her story:
“We started this journey in Las Vegas, NV. Gerold, (we call him G,) came to us at 9 months old. He never showed any symptoms of illness until he was 22 months old. He was a bouncy baby boy, as most would expect, so when he would sit on the couch and not want to do anything, we started to suspect something was wrong. August 19, 2017 he was acting extremely lethargic (for him) and started to have signs of swelling. Knowing something was terribly wrong we rushed him to emergency room. After many tests they informed us that it was likely he would need a heart transplant. I was in shock. This was not the news we were expecting to ever hear, but we knew there was no option for us other than see that this little boy, whom we loved as our own, got everything he needed to survive. It was never a question of whether or not we would see this through until the end. It was going to be so much easier to do this if he was legally ours, so we started to file for adoption on September 19, 2017. On December 28, 2017, four months later, he was legally and officially ours! During the adoption process we came up to SLC for a transplant evaluation at the beginning of November, but other than that he was seen by a cardiologist in Vegas. Once the adoption was finalized we didn’t skip a beat, and by January 12, 2018, we moved to Salt Lake City. That is where we needed to be in order for Gerold to be listed for a heart transplant. He’s been seen by the transplant team at Primary Children’s Hospital ever since.
The hardest part was that G really didn’t have many symptoms of heart failure so it was difficult to accept how bad it really was. The only new symptom physical symptom was that he was a little bit sweaty, sometimes. That one outward symptom meant they did an ECHO, which showed extremely high pressures in his heart which were causing worsening function and that ended him up with a PICC line and continuous IV medication called Milrinone. It worked for a few weeks, but it didn’t help much.
I remember in the clinic office when they told me they needed to do a heart catheter and if the pressures were really as high as they thought the were.
The worsening of his heart function meant he needed the assistance of an LVAD (left ventricular assist device), to help pump his heart. That developed into him needing even more. G would need to be admitted and placed on the Berlin Heart as well. Despite the fact that I had more time than most to process the fact one day this could happen, I broke down crying because that was nowhere on my radar. We were able to keep him out of the hospital for nine months. I was so terrified of how he would react to being hooked up to a giant machine and how we were going to keep him entertained with how much energy he has.
Gerold was admitted to the hospital on August 1, 2018 for the surgery. We have no other choice but to wait for a heart transplant, this is the only way he will be coming home.
We have been living in the hospital since that admission, but that doesn’t hold him back or slow him down. G is the sweetest, craziest, and most high energy kid I know. It’s as if no one has ever told him that he is in severe heart failure and he lives every day pushing the boundaries of what he can do. He knows he needs a new heart (I’m sure he doesn’t grasp that abstract concept,) but he often talks about what he’s going to do when he gets a new heart and after his “Ticker” is gone, (we name all of his medical devices, the Berlin is ticker! LOL).
The top of the list are:
- Going to the aquarium (he’s going to touch a shark, stingray, and jellyfish),
- Going to the jump place, (aka trampoline park),
- Going to Grammy’s house,
- Getting a haircut (I don’t know where that one came from. Hahaha!)
I honestly didn’t think that he would be able to handle it but luckily he has done so, so awesome!
The transplant team has even had to create a new list of rules for LVAD patients…apparently top of the list is “no somersaults”
To be honest, the only way I’ve survived is by taking it one day, no… sometimes only one dressing change, or one moment…at a time. I literally can only plan one day in advance, and even then there is always the unexpected. Right now, all I know is that tomorrow we will still be in the hospital, so I plan for that. The end. No more planning. The future doesn’t exist past 24 hours. I figure out how to survive tomorrow and then do it. I think, I can do anything for a single day! Then when I lie in bed at night, I plan the next day. Repeat x189 (so far lol).
What I would like to be an advocate for is organ donation. Organ donation saves lives and my son will not survive without the selfless gift of donation. I have struggled SO much with praying for G to receive a heart, because I know it comes at the cost of another mother’s worst nightmare. That thought alone brings me to tears every time. What I can pray for, is when facing that horrific and devastating moment, my hope is that these shattered parents will be willing to make the choice for organ donation.I know it is the only way to save my son’s life and I cannot imagine a more selfless act. There will never be a day that I won’t honor that gift.”
The challenges that these families face, the endurance that they have to just keep getting through each day, and the knowing that all they can do is live right here right now. They find a way to laugh, they find a way to play, and they find a way to never give up hope. Please continue to pray for little G. He is so full of life and love, you can feel it from the moment you walk in that room. If there is anything we can learn from him, it’s mind over matter. This kid is hooked up to a machine that is pumping his heart and you would never guess, because he won’t let it hold him back. He is a superstar and I am so thankful I get to honor him today. Keep it up little buddy! One day, you will be running and tumbling and dancing like nothing ever happened!
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