cleft surgery 2.0

It is the eve of our next surgery for Gideon's cleft. February was his nose/lip reconstruction and tomorrow will be his palate. This will be 2/4 surgeries completed. He may need a 5th but that will be determined later. It's hard to believe we're here. Almost a year after he joined us earth side, and here we are doing the things we had only remotely known about.

As with the first surgery, I do not have many fears. Even with the thoughts of what can go wrong while they are under anesthesia. It has always seemed like anything cleft related was just "handled" already by God. Do we have to walk through it? Yes. Is it part of something bigger? Yes. But, I have never felt "worried" about any of the clefty things.

So here we are. Bracing ourselves for tomorrow. The early morning wakeup and walk over to the hospital and then leaving him with our surgeon for a couple of hours. Then this part of the story is closed for a few years. We are looking at surgery #3 being between 5-8 years old. This will more than likely be a reconstruction of the palate and/ or upper jaw for Gideon's case. This is more of a wait and see what he actually needs next.

Tomorrow's surgery will consist of closing up his hard and soft palate. He has a partial palate on the right side, and no palate on the left. He also has a TOP TOOTH! We did not know how any of these things would look or function, so that has been a fun discovery lately. The sides of the palate will be brought together in sort of a zig-zag pattern, to avoid re-opening and make it stronger. If there is a large gap between the palate and the sinus, our surgeon will take some cheek tissue and place it in between the palate and sinus cavity. It's all so fascinating - thinking of the tiny tools and precision he will have to use to repair Gideon's (and every other patient's) palate. The overall surgery will be less time than the nose/ lips - clocking around 1 hour and 30/45 minutes total.

We will hopefully get a decent night's sleep tonight and tomorrow we will both stay in the hospital room with him, and then discharge happens Friday morning. We are hoping for as early as possible. With Gideon's trach + mic-key button for feeding, we don't really have a huge need to stay longer than Friday morning. The lack of sleep will be tough on both of us and managing his pain. We are prepared to see a lot of bloody drainage post-op but that should really clear up on day 2 as well.

What happens next for Gideon??? Once he is recovered from surgery, we will continue working on his Passy-muir valve and weaning the vent at night. We will continue working on all things developmental and he will officially begin feeding therapy in 2 weeks! This is HUGE. He has such big interest in foods and LOVES tasting everything, but he doesn't know exactly what to do. So the big things we're working on are loosening up his cheek muscles and working on the reflexes involved in sucking and chewing. Easier said than done but we are committed. This baby will be enjoying all the delicious things before we know it. And I'm already planning a "party" with cake for him when he is on solids as a way to celebrate.

Gideon helped write the first part of this and was very, very interested in the plasticwear from dinner.

someone couldn't hang for too long tonight.