Here we are, over two years since the last update on Clay. No news is good news, right? He bounced back from that last surgery in 2020 like a champ, and aside from trying to dodge the crazy COVID bug for the past two years, our lives have been relatively quite and normal, thank God!
Oh yeah, except we did add another little bub to the family! Mr. Miles Robin was born last September 2021 and has just completed our family in a way I couldn't have ever imagined. There's 10 years between him and Clay, and 8 years between him and Oaklee - it's been the sweetest thing watching them all dote and love on him. Clay has been wayyyy more involved and loving to Miles than he ever was with little sis, haha. Him and Oak still fight like cats and dogs.
Clay did have a really nasty respiratory bug back at the end of May 2022, that put him in the hospital for a few days. He was diagnosed with bacterial pneumonia, and given antibiotics, extra oxygen and lots of nebulizers and inhalers to help him get over it. It hit him crazy fast and was very scary to see. The night we decided to take him into the ER, he was having coughing fits and oxygen levels were into the 70s. We'd never been in that situation and not had back-up oxygen to help, so it was super scary. He was scared, too. I'll never forget him saying to me the morning we took him to the ER - through tears, "mom, you know how some people only live to be a young age, that's what I'm afraid of." Y'all. It's heartbreaking that a child even has to think those kinds of thoughts when they're sick! He was retracting and working so hard to breathe, I was afraid he was going to have to be intubated because he was struggling so much. Looking at the x-rays, I also feared reherniation. His little left lung was so hazy & cloudy, and I'm pretty sure I could see bowel loops up high. But our surgeon tried to reassure us it was just his floppy diaphragm, which sits much higher on the left side. Still, the thoughts of reherniation had been in the back of my mind ever since.
It took a couple of weeks, but he bounced back from that illness pretty well. We went for a follow up with the surgery team at UK in August, and while his left lung had cleared up from the pneumonia, the x-rays were inconclusive as to whether or not his diaphragm is still intact. The radiologist was concerned that bowels were up, but the surgeon wasn't so sure based on past x-ray images. Because Clay has bounced back to "normal" after his illness, the surgeon recommended that there isn't much rush to do a CT scan or other tests and recommended to follow back up with them in 6 months.
After that appointment, and taking in all the "what-ifs" - again - Eric and I decided we wanted to reach out for a second opinion, especially while Clay was doing so well, and his case isn't emergent. So, I contacted the CDH specialty clinic at John Hopkins All Children's Hospital, in St. Petersburg, Florida. We wanted to meet with the highly-renowned Dr. Kays & his team, who are truly beacons of light within the CDH community. People travel to this facility from around the world because it has such a positive survival rate, and it's a center that ONLY treats patients with Congenital Diaphragmatic Hernias. That in itself is such a relief to me. CDH is such a complicated diagnosis, and it goes wayyyyy beyond birth. Making this appointment had been something I'd contemplated for years.
I guess I should also add in - our longtime trusted surgeon, Dr. Draus, recently left UK for a job in another state. We were all very sad at that news because he's literally been the one to do every surgery and procedure Clay's had done in all of his 10 years of life. Now that we're seeing a new surgeon at UK, it was just like - why are we sticking around here and not seeking out more specialized care for Clay? He surely deserves it.
We went down for Clay's appointment at John Hopkins All Children's hospital in October. We were able to find round-trip flights for our whole family plus my mom and dad, for less than $800 total! So we took the opportunity for the kids to experience their first flights. Our family was able to stay in the Ronald McDonald house right next to the hospital for the 3 nights, while my mom and dad got a small condo right on St. Pete Beach. It was so nice to have them tag along, because Eric and I were both able to go to Clay's appointments while the other two kids stayed with Nan & Pops. Plus, we were able to enjoy a few hours of beach time with them.
Clay had his CT scan done, and then we consulted with Dr. Kays and the CDH team afterwards. When I say I was relieved, I truly don't know how to describe the feeling of "seen-ness" I had during this visit for Clay. Dr. Kays looked at him not only from a surgeon standpoint, but also looked at his nutrition, his physical growth, cardiology reports, cognitive abilities, it was just very much the "whole picture".
Then he went through each layer of his CT scan with us, and was very plain to see lots of bowel and other organs up in the left side of his chest. We could see his left lung being smooshed against the front of his chest, with the organs coming up through the back. It was very interesting to see other anomalies in his anatomy, like the way his aorta wraps around the opposite side of his esophagus, and his heart position, and even how large his stomach appeared to be (he'd just been fed some of his g-tube blends, so I guess he was really full). Dr. Kays was very thorough in his checkup and even discovered another issue not even on our radar.
It was hard to not breakdown in the middle of the appointment, just full of regret that we'd not been there sooner. In all honesty, we'd considered being seen by this team while I was pregnant with Clay 11 years ago, but chose to stick close to home so Eric could still be close to work and to help financially. It's hard for me to not wonder how different his journey may have been if we would've. But, as we've said numerous times throughout the years - everything happens for a reason. And I feel confident we're in the right place now.
Surgery will be needed yet again, for the 4th time. Dr. Kays said it was not emergent, and the timing would ultimately be up to us. He was adamant that he would be starting from scratch with his diaphragm patch-work. No more plugging holes, and his experience of performing over 600 diaphragmatic hernia surgeries will hopefully be on our side as he tries to find the best tissue to adhere the Gortex patch to.
I was in contact with the team earlier this week and we're hoping to get the surgery scheduled during the beginning of June 2023. That way he can finish out his 5th grade year normally. Y'all say a prayer for no emergencies along the way, and that we can make it to the surgery date in good shape. It makes my stomach turn every time I think about him having to go through this YET AGAIN. And this time will be so many more levels of new-ness and anxieties as we will be relocating to Florida for at least a couple of weeks. Lots of details to work out still, but I'm hopeful we'll be able to stay in the Ronald McDonald house again.
I'm hoping to get Clay referred to the Make-A-Wish foundation so we can plan something wonderful for him to look forward to prior to his surgery. Clay deserves everything wonderful. He is truly a great kid, and makes such an impression on everyone he meets - whether they know his whole story or not. He's such a bright child, with an infectious smile and laugh, and a healthy dose of sarcasm and funny banter. I always feel so lucky to be his Momma.
Y'all keep us all in your prayers as we get the details worked out and move forward. And thank you for reading this big, long update! Peace & love & Merry Christmas, yall!
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| Oaklee, Miles and Clay on St. Pete Beach |
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| Clay's first flight! He loved it. |
