Aidan had the 2 hour EEG yesterday which he had to be sleep deprived for. It was interesting trying to keep him awake. He did well during the test and finally had a "seizure" episode for them to record. The also were videotaping him during the test so that they could compare the EEG with his actual response.
The neurologist called early this morning to talk to me about the results and he said he can't say for certain that these are or aren't seizures. They aren't occuring in the part of the brain that epileptic seizures occur. These are happening deeper in the brain and although there is a spike on the recording at the beginning of the episode, his activity actually slows down after the initial spike.
He said this very well could be Aidan's brain's way of "waking up" from all of the drugs that he had in his system. It makes sense to me because the episodes have progressed from being very short, almost unnoticeable startles to involving his entire body. He jerks his arms and legs, his head turns and his eyes jerk in the direction his head is turned. It's alarming to see.
So, we're supposed to be trying to give him a dose of ativan if he has a bad episode and see if that helps calm them. He is generally fairly agitated in the evenings but usually a dose of tylenol will help him settle down and go to sleep.
Today has been a rough day on both of us. Aidan did fine this morning at his hyberbaric treatment and even on the way home, but once Russell and the nurse got him in the house he started fussing. He hasn't calmed down for more than 10 minutes since 11:30 this morning. He's cried and cried and fussed. I don't know what's wrong with him. We've given him tylenol, gas drops, ativan and extra clonidine and he still hasn't settled down. He's so tired but he still is fussing. He'll start to settle down and this his little face scrunches up and he starts crying again. It's like something is hurting him and I just can't figure out for the life of me what is wrong.
I'm at my wits end this evening. I feel absolutely useless. It's so easy for everyone around me to act concerned, but when things get bad or they've had all they can stand to see Aidan the way he is, they just walk away. It must be so nice to just turn your back on it and pretend he's okay. Aidan isn't okay! He quit being okay 3 months ago when he managed to drown in a pond with 6 capable adults around. He was supposed to be safe! He was supposed to be with people that were watching him and playing with him. I'm so damn angry right now and I'm sick... I'm sick to death of what my life has become. It's a nightmare! I thought things were going to be getting better- that Russell and I would finally be able to get out and get our own place and we'd have our little family and everything would be great. Boy was I ever wrong.
I don't want to drag everyone down with my pity party. Everyone wants to know how Aidan is... well, here's a day in the life of Aidan. It's a particularly bad day and one I wish would end soon. Sorry for being bitter, but I can't help it.
8 comments:
Erin,
I am praying Aidan's brain is waking up. That sounds very encouraging.
I am so sorry he is having a bad day. Hopefully he will get settled down soon, and you both will have a good day tomorrow.
I am also praying to give you strength, you are a very strong person. I admire you for all you are doing. You defiantly have the right to be mad. Know their are a lot of people praying for you and your family. May God bless you.
Erin, Russel, Aidan and family, my prayers and heart goes out to you. I pray that God give you peace and strength as you walk through these rough times. Please know that there are people out there praying for you all. Words seem real cheap and inadequate to give comfort to you and the pain you are in. God loves all of you and Aidan is one of his kids and will take care of you. Love and prayers sent.
Erin,
I pray that God will continue to give you strength. As a mother it is painful to see your child hurting or upset and not be able to fix what is wrong. What happened to Aidan was an accident. It could happen to anyone at anytime. I also pray that God will continue to work his little miracles in Aidan's life and one day he will be able to run and play again. My son asked all afternoon if Aidan was feeling better. I just told him he will feel better soon. He asked God in his prayers tonight if he would make Aidan feel better. I can not say I know how you feel because I can't but I can tell that God is getting you through this. Aidan is a fighter and he was fighting today for what ever reason. God bless you and all of your family. Ttyl.~Amy
Thank you for the support- I hate to sound ungrateful for the outpouring of support and prayers from everyone. When Aidan is okay, I'm okay and when he's having a bad day, like today- I'm having a bad day, too.
I know that God is working miracles in Aidan, and I know that a lot of today is just Aidan's personality shining through. He definitely is a fighter, I have to agree with that statement.
There are just days when I still want to scream and cry at the injustice of it all. Why do bad things have to happen to such sweet, innocent babies. Why did this have to happen to our family. You always hear that bad things happen to good people. They never seem to happen to those parents who abuse their kids or pawn their kids off so they can get drunk or high or whatever they do to neglect their children.
I'm not saying I'd want something like this to happen to them or their children, but it all just seems so unfair.
Aidan settled down and fell asleep for a few hours, although he woke up around midnight. Hopefully he'll go back to sleep and rest comfortably through the night.
(((((Erin))))) ~ Lord, I pray right now for your Healing anointing to touch and heal Aiden, in Jesus Name. For your strength, peace, and wholeness to invade their home and for Aiden to continue to be a sign and a wonder of your Healing power in the earth. Amen.
Erin, I am very proud of you for being strong enough to tell the truth on how you are feeling. Letting it out may or may not help you feeling better, but it sure shows us all you are human. I would be angry too at the fact that there was 6 adults all around and he still found his way down to that hateful, disgusting pond. I have different words in my head about that place but I am a Christian lady and I do not want them to come out of my fingers.If I was there I would blow the thing up and fill it with cement. I would never want to see that place again.
Love, Cindy. (sorry)
Unfortunately, I was one of those 6 capable adults who could have been keeping an eye on him. I was too busy trying to decorate for his party. I thought he was safe. I thought he was having fun, playing outside like he usually does when we visited.
I was going to bring him inside because there would be people driving up and I didn't want him to run out in the way and get hit. Never did I think we would have to worry about pulling him out of the pond.
Hindsight is just that... hindsight. I can't do anything about it. It's just that when he has a bad day, I feel just as helpless as I did the moment we found him. I'm afraid of losing him all over again.... for good.
I'm human, I do the best I can.
Hi -- I got to this blog through the Alpha Phi Omega list from Yahoo and have been following the story ever since.
Be angry! It's okay! True, it doesn't solve anything, but the feeling is real and keeping it in doesn't help either.
Sure, you can "would-a, could-a, should-a" yourself to death. Unfortunately, accidents happen to people we love. One of my friends is fond of saying, "God never gives you more than you can handle" to which I reply, "I just wish God didn't have such a high opinion of me these days."
My APhiO pledge "mom" used to be a pre-school teacher in San Francisco. The school had their classes named for ocean-related animals -- Sand Pipers, Rainbow Dolphins, etc. -- except for the oldest class which was the Coyote class. I went with her to "graduation" one year and as they finshed doing the promotions to the higher classes, one of the little guys came running over to us and said, "I can tell I'm a Coyote. I feel much stronger, now."
May you continue to be a Coyote.
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