In the days that followed, we checked in on each other a few more times. Caleb was recovering nicely from his Glenn procedure (for more info on the procedures & defects click here). He was discharged from the hospital before we left the PICU, but Katie was nice enough to come back downstairs to tell us they were leaving and for us to exchange contact info. She brought Caleb with her and I got to hold him for a minute while she wrote down her information. Quickly we became Facebook friends and were messaging updates back and forth quite often.
We had several things in common. Caleb also has an older brother, Jonah who just turned four. Caleb was born at PMCH the day Eli was discharged from his first surgery, making Caleb exactly 3 months younger than Eli. Their heart defects are basically the same; they were each born without a functional right half of the heart. They had each made it through their first two heart surgeries without huge problems and their paths were paved for their Fontans to be done sometime in 2013.
As we've come to learn, the path for a heart family is never set in stone and it can change very quickly. About three weeks ago, Katie & Daniel noticed Caleb's face was swollen. A visit to the pediatrician led them to a pediatric nephrologist because it was thought something was wrong with his kidneys. Fortunately, his kidneys were fine. They took Caleb to see his cardiologist who performed an echocardiogram. It showed that Caleb's heart was much weaker than expected and not functioning well. He was scheduled for a heart cath on Nov 1. That morning in the cath lab, Caleb went into cardiac arrest. His heart stopped. Thank God they were at the hospital with exactly the help he needed. It could have happened at home or the night before while they were trick-or-treating, but in His plan, Caleb was exactly where he needed to be when it happened. The doctors were able to revive him, but it became painfully clear that Caleb's heart was not going to last much longer.
He was transferred to Riley that night. St. Vincent's hospital is a wonderful place and we are so privileged to be patients there. Obviously we trust their staff with Eli's life and Katie & Daniel must have felt the same. However, St. Vincent's doesn't do heart transplants and that was the only option left for Caleb. So, off to Riley they go to start the process of getting on the transplant list and then the grueling wait for a heart for Caleb. He was officially listed on November 9. Since his cardiac arrest, he has done remarkably well. Just tonight I saw some footage of him and his daddy doing a dance. He's very cute and has lots of smiles, but he's not healthy enough to leave the hospital. Katie & Daniel were told he would not leave until he has a new heart. The family has moved into the nearby Ronald McDonald house.
As a heart parent, these are fears that lurk in the back of our minds all the time. Most of the time we're able to ignore them and live our lives, but then something like this happens. So of course I'm worried about Caleb and his family, but I have to be honest here and confess that it worries me for Eli. Even if the third surgery "works" it is not a fix. These hearts cannot be fixed, they can be made functional for a long time until the heart gives out and a transplant is required. Caleb's heart isn't holding out for the third surgery, why should Eli's? Caleb's situation brings those fears front and center again.
In no way am I trying to say that my fears are anything compared to the emotional roller coaster Katie and Daniel have been on in the past couple weeks. I am amazed by this couple. From the outside looking in, I'd have to say they have an amazing support system of family and friends. Almost immediately fundraisers were started to help them finance the stay at the Ronald McDonald house (it costs them $15/night FYI) and other expences encountered as they wait for the perfect heart.
One of the main questions we got when Eli was diagnosed was "what can I do to help?" I assume they've been asked this a lot lately. If you're reading this and would like to help, I have a few suggestions. First of all, pray. Pray for Caleb's heart and body to hold out long enough to receive the perfect donor heart. Pray for the transplant to go well and for his body to not reject the new heart when it comes. Pray for his family to remain a tight, loving family with a sense of normalcy throughout this process. Pray for the donor family who will give the most selfless gift imaginable -- their dead child's heart so another child has another chance at life. And pray for Katie & Daniel and all other heart families like us who are conflicted with the thought of praying for someone to pass so that our child might live.
What else besides prayer? Sign up to be an organ donor. It's easy. To register, click here. I did it a few nights ago. I've had the red heart on my driver's license since I was 16 indicating I want to be an organ donor, but I registered anyway. After you register, let your family and friends know your wishes. And, if the unthinkable happens to your child, please donate their organs. Eli is under 25lbs, he wouldn't be able to receive the heart of a full grown man, but he could if it were a child.
There are a lot of myths and untruths associated with organ donation. This link and this link help dispel false information and provide correct answers to many questions. I learned a lot from browsing these sites.
Also, spread the word about congential heart defects. I know I recently posted about this, but we need more people to be aware. CHDs are more common than most people realize. One of every 100 babies born has some sort of a congenital heart defect. Many are correctable, but many such as Eli and Caleb (and many more I've met along the way) have no fix available.
|Eli & Caleb have already beaten some odds just to be here now, however there was a time for each of them when we didn't think they would be alive for their first birthday. Thankfully they are here, but many are not.|
If after keeping them in your prayers and signing up to be an organ donor, you want to do more, please contact me. My email is email@example.com. Other ways to help could be buying from the fundraisers organized for them: "Pray for Caleb" bracelets are $2 and tshirts are $10. There's a website you could visit to sign up to bring them a meal. Mostly, the family is asking for prayers. If you want to follow Caleb's story yourself, you can find their blog listed on the left side of this page. It's titled "Caleb's Heart".
Thank you for reading, thank you for your support, and thank you for your prayers. You know we cherish them all With Every Little Beat...