Monday, June 12, 2023

Post-Surgery Update

Here we are — day three post-op, and Clay is doing very well, all things considered. His recovery this time around seems to be going a little more smooth compared to past surgeries… or maybe we’re getting used to the process and know what to expect? An unfortunate likelihood, I suppose. But we are hoping, praying, knocking on wood, and crossing all of our fingers and toes that this is the LAST diaphragm repair surgery Clay ever has to have! Please Lord, Let it be! 

We are still shaking our heads and in disbelief that Clay spent 13 hours in the operating room on Friday. We had to be at the hospital for the pre-op process at 5:30am, then we didn't get back to see Clay post-operatively til 10pm! So it was an incredibly long day. Thankfully, we were updated via text almost every hour with the same kind of brief message - the procedure was still in progress and Clay was doing well. As the day wore on, I was wishing those texts were a little more descriptive though! The doc did consult with us face-to-face a couple of times throughout, so that was also a relief. 

Dr. Kays was really pleased with the end results, but I reckon it took a lot of pondering over his anatomy to even get to the point to place the patch. His exact words were - it’s a mess in there. 😅 He found more native diaphragm muscle that had not been used in other repairs, so he was glad for that, but that native muscle was about 4 inches lower than the patches that were placed before. CT scans and ultrasounds from when we were here in October had pin-pointed his left kidney as being sandwiched up next to his spleen, which was all positioned in the way of where he wanted to place the new patch... So we spent the majority of the day thinking he was going to have to relocate the kidney and risk the likelihood of injury and/or losing the kidney all together during the move. But after a lot of searching and pondering, they found his actual left kidney in his belly, surrounded by intestines, and it was so hidden that it hadn’t actually shown up on previous scans. What they thought was kidney was actually an extra lobe or “cleft” in his spleen, and so once he realized that, Dr. Kays was able to move all of the organs down without a problem. He did cut away all of the old patch and started totally from scratch. 

The gortex patch he put in place covers the entire left side, and is attached to the rim of his existing diaphragm muscle, and then he had to sew the patch to his ribs on the backside of his diaphragm because there was no muscle tissue there. The doctor thinks he got a great patch sewn in all the way around though, and with it being 4" lower than any previous repairs, it allows a lot more room for his left lung to expand too! Even though it's a patch and obviously not a working diaphragm, it's still a barrier and in the proper placement, and should do better than he's ever had before!

After surgery, Clay was sent straight up to the CDH floor—-where everything runs like a well-oiled machine. It’s been so wild to be in such a specialized unit, and I've been so emotional about it. I feel like we definitely made the best choice to bring him down here and I’m so glad we did. I cannot express how grateful I am to the whole OR team for their diligence and dedication to seeing that Clay’s repair was a success. I can’t imagine what it’s like to do their job! But I am so so thankful, especially to Dr. Kays. He has repaired over 600 babies and kiddos with CDH and has amazing statistics for their success. That’s exactly why we brought Clay here - to a hospital that has so much experience witb CDH! Overall, Clay has had a really great first few days of recovery. Hopefully it continues! He will have his chest tube pulled tomorrow, which has been draining fluid/blood from around his lung. Hopefully tomorrow we can start a little bit of food through his g-tube, and get him up and walking the halls a lot more too! He is so strong and brave, I am always amazed by him.
As always, thank you all for your thoughts and prayers! I always read the comments on Facebook with Clay and I know it brightens his spirit so much to know how many cheerleaders he has. Peace and love to all our friends! We love you all!

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