Aidan had two doctors appointments yesterday and one today. We met with the neurologist and one of the surgeons who did Aidan's trach and g-tube to discuss the Nissen procedure. Our neurologist wasn't feeling well, so he didn't really do an exam. He asked a lot of questions and said that Aidan is looking good. He's ordered another MRI, a SPECT scan and a 2-hour EEG. They haven't been scheduled yet, but it should be soon.
The surgeon wanted to discuss the surgery because he didn't think we would want to just jump into putting Aidan through an unnecessary surgery. From what we told him, he said that it didn't sound like Aidan has reflux anyway and the nissen wouldn't help throwing up. He was glad that I took the initiative in changing Aidan's formula. He also said that Aidan was looking very good. We weighed him and he weighs just under 35 pounds, so he's gained about 6 pounds since he went to the hospital last Sunday. We'll have to go back in June to have the g-tube resized but that will be an ongoing thing every 3 months as long as he has the g-tube.
A speech therapist came out yesterday to do her initial assessment and she is going to schedule a swallow study to make sure that Aidan is able to swallow different things and not aspirate them. This is a step toward getting him to eat by mouth.
Today was the appointment with the pulmonologist. This was the first time I'd met him and I really like him. He said that Aidan was a lot better than he had expected from reading his chart, and the fact that he isn't on a vent or oxygen dependant is great. He also said that he thinks Aidan will most likely move a lot faster than he had expected in getting the trach removed because he is doing so well right now. It's all good news to me and made me get teary. I'm so ready for his trach to come out. That will be a huge step.
We're doing a month of breathing treatments and then we'll go back for another check-up and the doctor will schedule a bronchioscopy to go in and take a look at Aidan's lungs along with some other things. The next step will be to get him a passy-muir or PMV. The PMV is a one way valve that fits over the trach and will allow Aidan to breathe in through the trach, but he will have to force the air out through his nose or mouth. This will allow him to talk or cry like normal. If he does well with that, then we can start putting a cap over the trach which blocks it completely. We've experimented with doing the capping while Aidan was in rehab and he did pretty well with it.
So far, everything is looking up. Aidan continues to surpass the doctors expectations, and we're seeing new things in him every day. Today for instance, I had a Thomas book that we had bought him the day before his accident and I took his hand to push the buttons on it that make sounds like the trains and he relaxed his hand so that I could help him push them again. He also rolled from his side where the nurse had propped him, to his back. He was well supported so it wasn't an accident. He also moved his mouth when Russell went in to give him goodnight kisses and squeezed his finger. It's little things, but those little things mean a whole lot to us.
I am so amazed at the power of prayer, and at everyone's outpouring of love and support for our family. Please pray that Aidan continues to supass all of our expectations and makes a miraculous recovery. God continues to prove to me every day just how great and awesome He is.
Bless you all!