Hello from the hills!
We were discharged from the hospital on Tuesday the 29th - one full week from surgery day, and Clay is doing so great.
While we were in the hospital, we had our hopes up of being able to bust out of there on Monday - but we had a hold-up with getting our extra equipment ready to take home, so we had to wait til Tuesday. We came home with an oxygen concentrator, and a feeding pump to run his food through at a more continuous rate, until we can work back up to the bolus feeds he was getting prior to surgery.
Clay is still 100% g-tube fed, even before surgery - it's just something we've gotten used to doing after nearly 9 years, but we are still holding on to hope that one day he'll eat by mouth! He's came a loooong way, and we are currently doing feeding therapy every 2 weeks via Zoom, and his therapist is very encouraging that he's making progress and will get there eventually. His interest with eating by mouth is hit or miss, but he definitely has his preferences - roasted chicken and Fruit Loops were his favorites before surgery. Maybe he'll feel like trying some more food by mouth soon, and maybe it will feel easier to swallow now that things are where they're supposed to be!
As far as the extra oxygen goes, while we were in the hospital Clay was still battling the fluid retention, especially in the space around that little lung - so he ended up getting another dose of Lasix on Monday, and that helped tremendously. As he peed off all that extra fluid, his chest x-rays started looking much better and he started having more breath sounds on the left side when listening with the stethoscope - all good things! By the time we came home on Tuesday, he was holding his oxygen levels up just fine on room-air! It's still a peace of mind to have the equipment at home, just in case. We keep the pulse-ox on him at night to monitor his levels.
Clay's done wonderfully since we've been home. It was so good for him - for both his mobility and his spirits to be in his own space. In the hospital, he was really getting cranky about getting out of the bed and walking - I know he was bound to be in pain from the surgery, but also just the hassle of walking with the IV/feeding tubes was discouraging - and the lack of stimulating environment. Since we've been home, he's gotten around the house with not much problem! Sitting and lying in different positions have been easier as well. You can tell he's sore, but definitely on the mend. We have a follow-up appointment with Dr. Draus on October 12.
Coming home with all the boxes of medical supplies and the equipment was a major flashback from Clay's early days. When unloading and trying to make room for all the new goods, I came across boxes and totes full of things I'd almost forgotten about - trach cleaning supplies, Passy muir valves, his little ankle braces for physical therapy, an ambu bag, so many tubes and syringes...so much stuff that was such a part of our everyday life for so long. It just brought me to tears thinking about how far our boy has come.
He is one strong dude and continually leaves me amazed at what a person can endure. We're still wondering how long his guts were up in his chest, and I still have a hard time believing how this whole reherniation was caught in the first place - It feels like divine intervention. We're all so thankful at how smoothly this operation went and how well he's doing with recovery. This whole experience has led to a better understanding for him - it's kind of like he's able to claim ownership of his life story now. His story is one of struggle, but one of overwhelming triumph too.
We are so, so grateful for all the thoughts and prayers and good vibes that have been poured over our family. The gift cards, food and well wishes have been amazing. In today's current climate, it's hard to scroll through social media and feel positive - but when using it to send these updates and read the comments with our boy, it's truly been a light for our family the past few weeks. We love you all and appreciate you so much. ❤️ Peace and love, dear friends. xoxoxo!
