Last Monday on February 3rd, Tayton had his 9th surgery. This picture is before surgery and we weren't isolated in our corner room. He loved playing the Wii. This time it was another laser treatment and steroid injection on his arms, hands, and thighs. They did the thighs because it is where they took the skin for his skin grafts and it scarred pretty bad. I was a bit nervous because his airway doctor wasn't going to be there for surgery and I wanted his airway to stay safe. Every other time he has had a surgery he has always been on a ventilator after. I was nervous that if he was under anesthesia he wouldn't breathe very well and the plastic surgeon wouldn't know what to do for his airway. I always plan on the worst happening because of his history and it is easier to deal with emotionally when you plan on the worst happening. But no problems at all. The surgeon came back and said it was a really boring procedure and everything went as planned. Not one complication. I seriously couldn't believe it. Not one complication for my sweet boy. That hasn't happened in 15 months. I was so happy and I think everyone in the recovery room thought I was a little nutty because I was so happy after a surgery. Seriously how could you not be happy to see him like this after surgery, instead of on a ventilator.
The only problem with this surgery was he seemed to be really tight after and now he can't bend his hands that great, so back to weekly physical therapy up in Logan, and twice daily with mom.
Sooooooo now to the fun part. We went to the only other airway doctor at Primary Childrens that we haven't seen today. I wanted a second opinion on what to do for his airway. This doctor was nice and professional, but it wasn't the news I wanted to hear. Basically summed up in a nut-shell, Tayton will never fully recover from this, ever. It is because the scarring is right on his vocal chords. If it were below, they could do other surgeries that would fix it, but Taytons not even a candidate because the damage is too high in his airway. He said Tayton will need to have a posterior cricoid graft surgery eventually because you can't go in every 3 - 5 months the rest of your life for surgery and the airway dilation's should have worked by now. The posterior cricoid graft surgery, they laser off portions of your trachea and replace it with rib cartilage. It is a very extensive surgery and you are in the hospital for quite a while. He said he would have done exactly what our other doctor has done. He said he felt comfortable doing the surgery but Dr. Smith has more experience. I asked how many kids there are at Primary Childrens with this problem. He said about 7 - 8 kids come in with subglottic stenosis, but Tayton is the only one with the vocal chord problem. So they don't deal with it all the often.
It just seems like there are these small surgeries we are doing, or a major crazy surgery. I feel like there should be something in-between. He did say that Cincinnati Childrens Hospital is the top hospital for reconstructive airway surgeries in the world. He thought it might be worth a try to consult with them because if there is a new procedure coming out, they would know about it. I all ready checked with my insurance and they wouldn't cover any of it to go out there. I am going to try a lot over the phone and talk to them and see if it's worth looking into. I am praying they give me some other options. But one thing I know for sure is that I am doing my very best to help Tayton recover and I want to know all the options before we make any major decisions. I just wish there was such a clear choice.
But everything else is going great. I'm sorry all I post about is Tayton and his surgeries, but it pretty much consumes our world. We just love our little boy so much. I love my sweet girls too, I'll be sure to post about them next time.
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