Oh hey guys..It’s been a while since I’ve used this space for an update on Clay. Like almost 5 years? Crazy.
Things have been pretty uneventful, thankfully. Clay’s growing and getting smarter and stronger all the time. He’ll be turning NINE years old in two months! We’ve been pretty cautious with concerns about COVID-19, and I’d be lying if I said I haven’t worried about the “what-ifs” if Clay were to catch the virus. With talk of the use of ventilators and ECMO machines to help COVID patients breathe, it all sounds too familiar and we’d rather not repeat that.
Well, the news we’ve gotten over the past week has not helped my anxieties. What an emotional rollercoaster it’s been..
We went for our 6 month check-up at Shriner’s last week, where we’ve been keeping an eye on Clay’s scoliosis. When the doc showed me the X-rays, I asked if I could take a picture because his anatomy just looks so unbelievably wild. Later that evening, I posted the pic of his X-ray on my Instagram stories, where one of Clay’s former surgeons seen it and sent me a message and said it looked to him like he’d “recurred”. Recurrence or reherniation means the hole in his diaphragm (that he had at birth) has opened up again and his intestines are back up in his chest.
Here’s the pic for reference: the top one is Clay’s and the bottom is one of a “normal” chest. Wild!
So on Monday, we had another round of chest X-rays and met with our old friend, Dr. Draus. He said he could see a considerable amount of bowel in the chest, which he said was probably compressing his left lung entirely. They could hear bowel sounds in his chest with the stethoscope. Dang.
Even though he has been doing well and this is something that’s probably happened gradually over time, we discussed the reality that another extensive repair surgery will be needed to put everything back in place. Dr. Draus said he’d have to block off an entire day to spend operating on Clay because, as always, who knows what they’ll find when they get in there. So we tentatively set a surgery date around the end of September.
We all went home and processed the news and cried, and processed and cried some more. We talked to Clay about everything and after the initial shock and anxieties about surgery, he seems to understand what’s going on and how it could potentially help him in the long run. I’m thankful Eric was able to go with us to that appointment because daddy always knows the best way to cheer him up...On the way home, he made a detour by Game Stop to let him pick out a new controller for his Nintendo and some V-bucks for Fortnite. We told him he’d get all the Fortnite playing time he could want during his recovery and hospital stay so that made things better. That little pick-me-up did the trick for Clay’s spirits 😊
Well, then yesterday morning I get a call from Dr. Draus and he said he had been reviewing Clay’s X-ray again with a radiologist and they were questioning whether his diaphragm has actually recurred; It could be that his left lung is just so small it’s leaving a lot of extra room for things to shift upward and his diaphragm may still be intact, just really “floppy”. So, the latest recommendation is that he will have a CT scan done in the next couple of weeks and we will get better imaging to see what’s really going on in there.
Whew.
The good news is that Clay is doing wonderfully and hasn’t shown symptoms of feeling unwell. His breathing is normal (for him), his digestion is regular, we’ve had a recent cardiology visit and his heart is working fine. So in either scenario his body is compensating well. If his bowel is up in his chest and we have to have surgery, we hope that will allow his left lung open up more and will help his breathing so that he won’t get so winded with physical activity. But we’re really hoping we can avoid surgery if possible.
If his diaphragm is still intact and the bowels have shifted upward because of the extra space his little left lung leaves, that concerns me because of the reality that that *can’t* be fixed. It doesn’t leave much “reserve”, especially, if he were to catch the virus. It’s just truly amazing that he does so well with what he’s got going on on the inside.
On top of all this, Eric goes for a pretty intensive foot repair surgery next Friday, August 28th, so he will be down and out for the next few weeks with that. 2020 is just weird.
Y’all just say a prayer for our miracle man and that we get some definitive answers. Our CT scan is scheduled for Monday, August 31, then we will go from there. I’ll try to keep ya updated!
Love y’all!
