The first photo is one I took last week sometime. The others were taken today. One was during Aidan's OT session. It was the first time we had him positioned that way, he tolerated it pretty well. I love the last picture because if you had told me that Aidan would be flexible enough to be positioned like that when he was still in the hospital, I'd have laughed my butt off.
We met with the pediatric ENT yesterday after an interesting hour and a half wait (I was on time) but there was some confusion and the doctor had to go to surgery. We have another appointment in 3 weeks and in the meantime we are to work on capping off Aidan's trach. We have a little cap that we put over the end of his trach and he has to completely breathe on his own. I started with him yesterday for 30 minutes and he did great. His O2 sats were between 97 and 99% and we capped him off a couple more times for up to 45 minutes and again he did really well. We even capped him when he was asleep and his sats didn't drop at all.
Our goal is to get him to where he is capped more often that he isn't and once he is able to tolerate it for 24 hours consecutive, he should be able to have the trach removed. He'll have to be observed overnight in ICU with the trach capped to make sure he is doing okay before they'll make the decision, but we're still hoping for the end of the summer or early fall to have the trach removed... maybe sooner if Aidan continues to do well.
As far as this goes, this is exactly what I've been hoping for. I just wish I could get more concrete answers when it comes to his neurological status, but that just isn't the nature of the brain.
We're looking into vision therapy for Aidan and I haven't gotten a call about the 24 hour EEG yet, so when I know more, I'll let everyone know.
Thank you for all of the prayers and support and for understanding my anger and grief. I feel like I'm on a crazy emotional rollercoaster and I just want it to be over.
Thanks again!
Erin
5 comments:
Wow! Aidan is adorable, what a handsome little boy. It sounds like he is making great progress.
Bless all of you.
Thank you for the update. Aidan looks great. He looks well taken care of and, if you don't mind me saying, he looks alert. Especially in the first picture.
Keep up the good work, and keep your chin up too.
Cindy.
What a beauty. Those eyes! It's OK to keep posting all of your emotions when you are up to it, Erin, we can (and do) pray for you & Russell SPECIFICALLY for what you're dealing with that very day during our nightly prayer time. Doctors know nothing in comparison to what our Almighty God knows about the brain and about His plans for His little child, Aidan. We're praying for you as you struggle through this, we do believe Aidan will be fully healed - we're praying for you & Russell's strength and growth during the process.
Aidan looks great! Having his legs bend like that is a true blessing from God, I look forward to the day Luke will bend his legs like that again. I'm praying that all will go smoothly in getting his trache out. I know that will lift a huge burden off your plate. To me trache's make life miserable. You guys are doing an amazing job, don't become weary in well doing for you will reap if you do not give up, that's my condensed version of that scripture.
Suzi
Erin,
The show you watched was I'm sure very troubling to you but on the other side of the coin that may have been a God whisper letting you know that you are not alone with your journey with Aidan, that there are indeed others out there that share your broken heart.
Kathy
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