Help Carl Get Back to Being a Kid Again

On October 9, Katie Clark and I went to Sweet Dreams' famous Chocolate Night. She picked up extra ice cream for her son Carl, and later that day texted me photos of Carl, covered in chocolate and looking as healthy and happy as any toddler with a bowl of ice cream would be.

On October 12, I received a very different text about Carl. He was in the ICU, on ECMO (if you need clarification on ECMO as I did, think an external set of heart and lungs), and it was unclear if he was going to survive. How on earth did he go from the ice cream-covered boy in the photo to potentially dying?

You've probably heard on the news that this year's RSV strain is particularly bad. Well, Carl is proof of that. His case of RSV resulted in pneumonia and then septic shock. Multiple organs failed, including his heart, liver, kidney, and lungs, and he was not expected to survive. And if he did survive, doctors thought he would need a heart transplant.

Fortunately, he was treated at UF Health, where the guy who literally wrote the book on ECMO works.

And if you've met Carl, you know he is a scrappy little kid who will fall down, brush himself off, and just continue on with his adventures. So it is not surprising to me that he is, albeit very slowly, brushing himself off from his run-in with death, so that he can get back to his toddler adventures. And he won't need that heart transplant after all!

He has a long way to go before he is recovered though. His little lungs were badly damaged, and he is still using a ventilator during physical therapy to support him as he heals. He had a tracheotomy put in as well, to lessen the burden on his lungs.

From ECMO side effects, he has lost the tips of his toes on his right foot, all of the toes on his left foot, and a portion of the metatarsals on that left foot. He will need extensive physical therapy to relearn how to walk.

He has also lost Halloween, Thanksgiving, Christmas, and New Year's during his stay in the hospital. Fortunately, his 3rd birthday was able to come to him, and he was well enough to join his friends outside of the hospital.

Carl will be discharged from the hospital soon, but he will still be on the ventilator and still have the tracheotomy in place. Both of these things require 24/7 medical supervision, and he is unable to continue rehab at an in-patient facility as long as he is still on the ventilator. Consequently, he will need round-the-clock home care. The local insurance-approved home care company currently only has staff available for 3 12-hr day shifts and 3 12-hr night shifts each week. Carl needs 7 of each shift each week. Katie and Clete will need to privately hire and pay out of pocket for additional help. To add to the financial challenge, Katie has not worked since October to be able to provide round-the-clock care for her son.

If you've been following Katie on Facebook, you may have also noticed that she is quite possibly the strongest, toughest person on the planet. I cannot fathom how she has managed to get through all that she and her son have endured without cracking. And I know that she and Clete will continue to fight for their son until he is back searching for dinosaurs in their neighborhood and playing with their dog in the yard. Katie and I have already talked about hiking a 14'er out in Colorado with Carl when he's older.

Let's help them continue the fight, and let's help Carl get back to his childhood as fast as possible.