Tuesday, April 29, 2008

doctors appointments and updates

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!
~Erin

6 comments:

Anonymous said...

Just wanted to let you know I have been following this from the beginning. I don't know what to say to make you feel any better,and I am very sorry we don't have any extra money or I would love to help out. I just wanted to let you know I have been checking in everyday and saying prayers for this sweet little guy.
The doctors sound encouraging, and it sounds like he is making great progress.
Know you are in my prayers.

Anonymous said...

Russel and Erin,I am glad to hear things are looking up and little Aidan is doing better. Still sending prayers and love for your family.

Leslie said...

I must have read this entire update 3 times now... I get back to work and then really just want to read it again and have to sign back on. And each time I cry! At work! Along with all of your family and friends, I am so, so excited to hear of these great steps little Aidan is making! What a tough guy! Good news of progress like this only makes my husband and I step up our prayers even more!

You must be so exhausted at the end of the day. My boys are your boys' ages, and each night I just collapse. I don't know how you find the energy to write these updates, but we ALL PRIASE THE LORD THAT YOU DO IT! I know I am only one of many people you don't even know that check this every single day, mulitple times a day! Thank you, thank you for keeping us updated. I am sure I am also not alone in saying that we feel like Aidan is one of our little family members.

We are praying for all of the specifics: the trach, the HBOT treatments, the reflux, the speech therapy, the finances, Russell's job search. And trying all the time to tell more people about Aidan, I know you covet the additional prayers.

I'll stop now or I will write all day long... Praise God for Aidan, for his strength, and for yours, Russell's, and his baby brothers'!

Brett & Leslie Barkley

Anonymous said...

Wow...those are GREAT signs! I love hearing the details. I'm very excited for you. Aidan is going to have quite a testimony.

Love, Mary Rosacker

Kristina said...

This is really nice. I'm glad to hear these good signs. Keep your chin up. (Chin up, chin up, up with your chinny-chin-chin, Sorry, I couldn't help myself) We're praying for you.

Anonymous said...

So glad to read this update on Aidan's progress! I know you are thrilled with the good news.
We will surely continue to pray for his miraculous recovery. I too am so glad that you find the time to do these updates to let us know how things are going. Please let us know when his appointments for the scans are. We are praying for GREAT results there too.
Continued prayes for Aidan's recovery, your family needs, Russell's job search.
Praying also that you see more and more progress daily. What you have described in this update sure seems like huge strides to me, and we rejoice in them along with you. May God bless you with even more today.
Thanks again for the update and hopefully you can continue to find a few minutes each day to let us know how he's progressing.
Lifting prayers for Aidan and your family