Yesterday Carter went in to have another dilation procedure done. Unfortunately his airway had gone back to the starting point and we were not able to proceed with dilation. I went in prepared for this news. Trav on the other hand was more hopeful that there had been some progress. I knew that no progress meant surgery. I thought I was ready for that, but hearing it and the complexity of it made me nervous.
In our opinion getting up at 4:00 am is way too early. I think Carter agreed.
Playing with Dad in the post op recovery room.
It's not a good sign when you have been in the OR so many times that you have a favorite nurse. Miss Terrie has had us every time Carter has been in the OR. She is one amazing lady.
He didn't seem too bothered about the news.
Dr. Rohn went in and couldn't get his 4mm tube down Carter's airway meaning the opening was back to where we had started. There are two different types of surgeries to repair Carter's type of subglotic stenosis. As luck would have it Carter needs the more invasive of the two. This was the part that I was not ready to hear. They will go in vertically on his throat and cut his airway open. Then they will take cartilage from his voice box and/or rib to create a new canoe shaped airway. This surgery can be done in one or two stages. Stage one, where they would perform the surgery and remove the trach all at the same time. Stage two, where they would perform the surgery, he would recover then they would go back in and do more repair and remove the trach. We are praying that he is a stage one. Recovery will be pretty nasty. They will keep him completely paralyzed for a couple days to avoid movement so there isn't any bleeding in his brain. He will be in the pediatric ICU for an undetermined amount of time. Recovery is the part that I am most worried about.
Dr. Rohn is going to speak with the two surgeons here is Dallas (one being the guy from Cincinnati) hopefully this week to discuss Carter's case. He will talk with them to see if they feel comfortable operating on Carter. He told us it might be worth a trip out to Cincinnati to get a second opinion. We will of course meet with the doctors here and make it a matter of prayer on where we should get the surgery done. We know that the best place is in Cincinnati, after all that is where the inventor of the surgery works. We will keep our options open, but pray that we feel good about the docs here for so many reasons.
I am so nervous about him going back in for a major surgery. I don't like the fact that the inventor of the surgery is still alive, because that just shows how new this surgery is. Don't get me wrong I am so grateful that something can be done, but the whole thing about "they were testing it on monkeys" only a short time ago doesn't provide much comfort.
I know that we will make it through this just like we have everything else, but knowing it's coming is really throwing me off. We hope to get it done as soon as possible meaning July/August. In the meantime we will keep at it and enjoy ourselves a little family vacation to SF and Seattle in a couple weeks. I was excited for a vacation before this, but am even more excited now.
In other news Carter will most likely be graduation from Occupational Therapy in the next week or two. He is a smarty pants that boy of ours. All fine motor skills caught up to were they should be. More evidence everything upstairs is working just as it should. Wahoo definitely reason to celebrate!