Tuesday, March 18, 2008

A glimmer of hope ...

I tried earlier this afternoon to update the journal but the internet connection at the hospital timed out on me and I lost everything that I had typed.

Aidan has had a pretty good day. He's had some storms but has calmed himself very well. Dr. Black has discontinued all IV meds. This means that Aidan is no longer getting the Fentanyl to sedate him if a storm gets bad. They want to see what he can do on his own.
Also, his meds are being revised again. This is going to be an ongoing routine, I think, until we find the right combination. They are taking away the meds that they don't feel are as effective and increasing those that are. As I mentioned yesterday, Aidan is on 11 different meds. That's a LOT for a 2 year old. We are adding some antioxydants to the mix. Vitamin C and Co-enzyme Q-10.

Aidan had to have another catheter inserted last week, but it was removed today, although he will have to continue being cathed because he isn't emptying his bladder well on his own. He had been but I think the tension from the storming and posturing are making it more difficult now. He also has something called C-diff. It's a bacterial infection in the intestines caused from taking antibiotics for so long. It is very contagious so we have to gown and glove up when we hold him or change a dirty diaper.

I held Aidan twice today and both times he fell asleep on me. It was nice to know that I was comforting to him, but he is so HEAVY! My arms fell asleep both times. Russell and I have learned how to give Aidan his medications through his g-tube, I know how to suction his trach, and I helped change his trach today. It wasn't as difficult as I thought it would be, but it's something I never thought I would do. I was afraid of doing the trach change because I don't want to hurt Aidan, but it was really quick and easy.

We've gotten responses back from some of the other rehabs as well, and they are all saying the same thing. They can only offer a few weeks and because of funding they really think that we should stay in the state. So it looks like we'll be going to Carolina's Rehab in Charlotte. The case manager is coming tomorrow to review Aidan's chart again and we should know something in a day or so.

Russell still has not had any luck finding a permanent job. He has an interview in the morning, so please say a prayer for us that he gets a job soon that will support our family. Having him around 24/7 through this whole ordeal has been a blessing despite not having an income for over a month now, but the bills are not going to pay themselves.

Today has been a particularly stressing day for myself. The grief that I feel is enormous. I feel like a part of myself has died, even though Aidan hasn't. All of the things I had hoped and dreamed for Aidan before this accident are gone. A part of him is gone and we may never get it back. I have to come up with new hopes and dreams for him now, and pray for a miracle for his shining personality to come back to us. I know I sound like a broken record when I say this, but I miss him. I can hold him and I can love on him, but he isn't able to hug me back or give me his little kisses. He used to sit in my lap and kiss me over and over and over until I had to tell him stop, or that it was enough.... looking back, it could never be enough. I miss the way he'd run up to me and wrap his arms around my leg to give me a hug, and I miss his jabbering because he absolutely refused to talk. I know that Aidan is a strong, tough, and stubborn little boy. I'm praying that he has enough fight in him to prove the doctors wrong. God has blessed us with the love and support of our friends and family and perfect strangers. He's graced us with the miracle of Aidan's conception and his survival from this accident and we're praying for even more miracles in Aidan's recovery and in his life.

We greatly appreciate all of the prayers, love and support we've gotten from you all, and we ask for your continued prayers.


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