Thursday, July 17, 2008

okay, maybe I shouldn't have watched that....

Many of you all who know me, know that I love medical shows. For as long as I can remember when I was a kid, I wanted to be a nurse. After starting nursing school I decided that it wasn't for me, at the time. Anyway, I've always watched surgery shows and medical shows, and I can handle seeing a lot of stuff. Well, tonight I started watching Hopkins on ABC... big mistake! For those that didn't watch it, there was a 2 1/2 year old little boy who had an enlarged heart. At one point they put him to sleep and there were complications that resulted in them having to start CPR... I lost it. I could not watch any more of the show until the end when they showed the little boy getting a heart transplant. Just seeing them doing CPR and then later watching the mother's reaction to the doctor's telling her that her son might die, just made me crumble inside. That is a feeling of complete helplessness and heartache I don't ever want to experience again.

On a good note- Aidan is doing awesome as far as capping his trach goes. Last night the nurse capped him for 2 hours straight and then this afternoon he went for 2 hours and 40 minutes. His O2 sats were 97-99 and occasionally went up to 100%. He had OT this afternoon and the therapist and nurse noted that he is breathing through his nose almost exclusively when he is capped, which is great! His breathing isn't as shallow or fast so that is really good too.

The therapist was working with Aidan to try to turn his head to follow a toy or my voice. It seems like he is trying and he is definitely following the sound with his eyes. He was exhausted by the end of the session and was asleep before the therapist left.

The church that I grew up in has gotten together and organized a yard sale for this Saturday to help raise money for Aidan so that we can purchase even more therapy equipment/devices for him. I can't even begin to express my gratitude for the outpouring of support and prayer for Aidan and our family. We are so blessed to have so many people all over the world who have been touched by our little man and who have in turn touched our lives in so many ways. So, however simple the phrase, THANK YOU!

edited to add: Aidan has been squeezing our fingers when we ask him to. At first I thought he might just be doing it during a seizure, but he's consistently done it with my mom, my mamaw and me. It's a little slow sometimes and a little weak, but you can definitely feel him squeeze and relax and then squeeze again. I've also noticed more seizure activity when he would normally respond to someone or something. For instance, the other evening, Mom was talking to Mamaw on the phone and she had the speaker on so Mamaw could talk to Aidan and when he would have normally responded, he had a little seizure, he actually had two. To me it seems like the increased brain activity is triggering the seizure response. I'm not sure if it's a good thing or bad thing. I think it's good that he's having the increased activity and wants to respond or interact, we just have to get the seizures under control.


Anonymous said...

Erin, It's great to hear that Aidan is doing well with the trach and squeezing your hand. I know that you crave some response from him, and you should celebrate these. His responding to your voice is wonderful! Love, Belinda

Anonymous said...

I only saw the very end of that show. When the boy walked out of the hospital with balloons!
I pray that for Aidan too.

Anonymous said...

Wow it sounds to me like Aidan is making great progress. Although I have never been around anyone in his condition. He must be aware of what is going on if he squeezes your finger when he is asked,and if he is having the seizures due to trying to respond to you. I would think that would be a good sign. It also sounds like he is doing great with the breathing.
I get so excited when I hear he is making progress. I know it probably sounds strange for someone who doesn't know your family. I guess Aidan just has the gift to steal peoples hearts.
Thank you for the up date. I will continue to pray for all of you.

Anonymous said...

This may not be true with all kids but I noticed every time Ashleigh had periods of more seizure activity it was followed by her aquiring a new skill. It was explained to me that perhaps the brain rewiring is causing increased electrical charges and some of them are causing seizures.

Liz and Ashleigh