Aidan slept/rested well all night last night. He only woke up or got upset when his diaper needed changed or he needed to be repositioned. He was able to calm himself down and didn't go into a storm. All I can say is praise God! I don't think the storms are completely gone, but the medication is helping keep Aidan calm and is giving him more control over them.
Although the valium is a sedative, he's still very alert when he's awake. His eyes are wide open and he looks around the room. I bought him a huge Thomas the Tank Engine balloon last Friday and put it at the foot of his bed. He's been looking at it. He's also been following our voices. He'll look in the direction of the person talking and will occasionally actually look AT me.
It's taken me a while to get this posted as I've had to take several breaks to help with Aidan. The new trachs came in today so we were able to change his old one out with a new Buvona that fits him much better. The difference is like night and day. That is another prayer answered.
A meeting is being planned for Thursday for us to meet with our doctors here and also with the doctors from the rehab center so we can all make sure we're on the same page as far as Aidan's care goes. Our social worker here, who is just WONDERFUL, is getting the paperwork started for a program called CAPC which will help us with some of the medical supplies and care we'll need once we get home.
There is so much stuff to think about and plan for. We're going to have to have a special bed for him and all of the equipment we'll have to have. It just makes my head swim. I thought I needed to have a lot of stuff when he was a newborn! They've mentioned wheelchairs and things like that. I'm thinking how are we going to get a wheelchair in our van.... I'm looking at buying a new stroller to use for both the boys. I want to get one that is a side by side jogging stroller with the swivel front wheel. I think one like that will work well for a while so maybe we can hold off on a wheelchair (maybe).
Aidan had another reiki session today. Since then he's been really calm and relaxed. His heart rate is actually pretty low right now and he is sleeping well. We've been so blessed with the outpouring of love and support from everyone. I know that some might not agree with our choice of trying some alternative types of therapy, but from everything I've read it can be beneficial and I know that from the short session I had, I feel much better-just centered, I don't have the overwhelming sense of stress or guilt that I was feeling before. I'm ready to move on to the next stage and get Aidan home.
Thanks everyone. We'll be keeping you all updated. :)
Please continue to keep Aidan in your prayers. He's coughing a lot more today, which is a good thing. Please pray for him to be able to respond by looking and comprehending what he is looking at. Bless you all!