Update on Carter

So almost a month ago we had another botox/dilation procedure done on Carters throat. After consulting with other ENT specialists at a national conference, the surgeon decided to do twice as much botox as the literature suggests. Then we had to wait three weeks before we could have another swallow study done, to see the results of the botox. However, the doctor did advise us to give him small amounts of pedialyte, and see if he chokes. If he does stop. If he doesn't great. So we gave him a couple bottles over the three week period. With some of them he did great, with others he choked immediately. So we were obviously confused. Was the muscle open, or not? Well it turns out, it is not. On the swallow study you can see the muscle still bulging into his esphosgus, blocking the milk from continuing down into the stomach. Well what about those times he drank the small amounts just fine? It turns out that he is still a "silent aspirator". That means that liquid is going into his airway, but he doesn't cough right away. So it appears that he is drinking just fine when he really isn't. Toot Toot. Here comes the mommy train. All aboard! Next stop GUILTVILLE.

So now what? That is the million dollar question. The only other treatment is surgery. Generally the surgery is done by slicing open the neck, moving all the major arteries to the side, and then cutting the muscle in half, so that it physically can not contract into the esphogus. There is a new technique where a laser is used. There is no incision, and the laser is passed through the mouth. So that is great news. Bad side, is that our surgeon (and really every surgeon) has only done the surgery with the laser 1 time, because it is such a rare condition, and the technique is so new. I'm just going to pretend I don't know that bit of information at this exact moment, or my head may explode.

The other thing is that the surgery really has never been done on a baby younger than a year. Carter is 5 1/2 months. The one other time he has done the surgery, just recently was on an almost 2 year old. I spoke with him a couple days ago, and he said he needs about a week, to consult with others, and really think through the surgery. He wants to think about it and figure out every possible scenario that may happen in surgery and after, on a 6 month old. He wants to make sure that the risk of the surgery is outweighed by the benifits. He did say to prepare for Carter to be admitted to the ICU on IV antibiotics for a week or so, because its a high infection situation, and Carter is so little he would have a really hard time fighting an infection. Ugh! Whenever I see an ad for UMC, or we have to go back for his procedures, I almost have a panic attack. I feel like we will never leave again. I know thats silly, but it scares the monkeys out of me.

So to make things more complicated. The occupational therapist fervently says do the surgery now. He needs to experience purees. Eating is not only a massive step developmentally wise, but also socially. And if he develops a food aversion, from not eating anything orally for the first year of life, she says that it will take YEARS to overcome. Meaning keeping the G-tube for years. And food aversion is not something that you can solve medically. The baby really has to overcome a mental block from eating, which when you are dealing with a little baby that can't communicate its a big problem. The thing that kills me is that HE LOVES TO EAT. When we were giving him the small amounts of liquid, we were giving it to him in a bottle at the same time as we were feeding him through his G-tube. Well when we had to stop, he just screamed and screamed through every feeding because we weren't giving him a bottle. When we are at the dinner table he is reaching for food, and grabbing my spoon.

Well here is the complicated part. Our peditrician fervently says DON'T do the surgery until he is a year. Everything in his throat will be bigger by then, there is less chance of a mistake. He will be able to handle the surgery better, and he can always LEARN how to eat. She wants us to go see an expert in the field of this specific condition. Okay doctor, can you give me his name and phone number? No? Oh yeah, there isn't one! The thing about this, is that although I am a fantastic, perfect house keeper (HAHAHA) there may be an occasional cherrio on the floor, and once he gets mobile and pops that cherrio in his mouth, and we then have a cherrio in his lungs, what do we do then.

So OT says yes to surgery...pediatrican says no....surgeon is....thinking. Sigh.
What do I think? I don't know what to think. I'm scared that the botox or dilation didn't work the last 3 times, so will the surgery work. The ENT specialist cant' be sure. Just the tests show this is what is wrong, and this is the treatment. The major side effect of the surgery is scar tissue, that may block the esphogus to some degree as well. But we can't just keep injecting higher and higher quanitities becasue there is a chance of damage to the vocal cords if too much is used.

I want my baby to be healthy, and I want to give the surgery the best chance of sucess, but I also want him to be happy. I can't even envision preventing a 10, 11, 12 month old baby from putting things in their mouth, and if he did there is a huge risk of pnemonia. I feel like we are forced to not choose the better of two options, but the lesser of two evils.

So I guess the surgeon is the deciding vote. I have total trust in him. I know his sister, and she said that he prays about his cases, and would do for your child exactly what he would do for his own. I trust his judgement. I know that he will do what he thinks is best for Carter. Carter isn't just another case to him. He's not a meal ticket or a number. He is Carter.

A friend posted this on her blog. I know "Good Things Will Come."