Tuesday, July 8, 2008

So, we met with the neurologist yesterday. Apparently I misunderstood him regarding the last 2 hour EEG that was done. Aidan only had one seizure episode during that 2 hour period and it was toward the end of the test. They were able to video tape it and compare the video with the actual EEG. The results were somewhat inconclusive because Aidan was having multi-focal seizures, meaning they were happening in two separate parts of the brain. One looks like an epileptic seizure and the other is most likely from storming activity (which are actually seizures happening deeper in the brain). Sometimes he's having them separately, but at times they both occur at the same time. We're supposed to have a 24 hour EEG scheduled soon. We're just waiting on a call for it to be scheduled.

As for the MRI, the doctor reviewed the images with me. It's one thing to hear the results and another entirely different thing to actually SEE the images. If you don't know what the brain should look like when it isn't damaged, it's quite confusing. Considering that I know enough about medicine to be dangerous to myself and my own imagination, the images distress me. I'm not going to lie. Aidan's brain is very damaged. Being without oxygen for nearly an hour did a lot of damage. I want answers, I've wanted answers from the beginning and they just can't give them to me. I asked how much of Aidan's brain is still functional or viable, they just can't say. I want to know if the damage is reversible, if Aidan will ever be able to do "normal" stuff again, or if he's going to be in a vegetative state for the rest of his life. They just can't tell me anything really. It's frustrating and heartbreaking.

I'm angry... I'm angry at myself most of all. If I hadn't cared so damn much about having a stupid birthday party for him, he wouldn't have been outside in the first place. If I had listened to my first instinct to take him inside with me while we finished unloading the van, he would have been safe, but I didn't. I didn't want to upset him when he just wanted to play outside. I'm angry that none of the doctors can give me definite answers to my questions regarding Aidan's prognosis and the more they can't tell me the more I'm afraid he'll never recover. Aidan didn't deserve this. He deserves to run and play and laugh and grow up and do all the things that little boys do. He doesn't deserve to be immobile and trapped in a body with a brain that isn't functioning normally. People ask me all the time if he recognizes things, if he feels pain, etc. and I feel stupid for telling the "I don't know." But I don't know. I don't know what Aidan recognizes, I don't know if he feels pain or joy because he can't tell me or convey that to me. I can only assume that because he's crying and making pained faces that he's hurting. He doesn't smile (consistently) or laugh to show joy, so I don't know.

I want nothing more than for Aidan to walk, and talk, laugh and smile and run around and play with his brother and the dogs. I want him to drive me crazy because I have to tell him again and again not to climb on things or to leave the TV alone or to stay out of something he's not supposed to be in. I'd rather deal with his night terrors and waking up in the middle of the night than to do this... I'd do it in a heartbeat.

Logically, I know that because his brain is still growing and because he is so small his chances of improving are better than if he was older. I know that we're trying to do everything possible to get him the treatments and things he needs to stimulate his senses and his brain so that he can recover. Emotionally, I'm a basketcase though. My fuse is beyond short and I'm tired and I'm miserable. I make everyone around me miserable, too, and I'm sorry for it. I would have rather drowned in that pond than Aidan. At least then I'd know that I'd lived part of my life and I'd brought two of the most beautiful little boys into the world and that they would be taken care of by Russell and family that loves them.

So, for now that's all the news that I have. As far as the spect scan goes, the information that I shared the other day is all I got. There are no blockages in the blood flow in his brain. I will have to wait until tomorrow to see about getting the images. He has an appointment with the pediatric ENT to discuss the passy-muir and to get instruction on it and a schedule for him to wear it. I will post more tomorrow night or Thursday.

Sorry for being so depressing, I'm just not doing very good at dealing with this right now. I guess I've hit the anger stage of grieving.

Thank you to everyone for your continued prayers and concern for Aidan and his recovery. When I'm having a good day and able to deal with everything, I know he's going to get better and that it's just going to take time. For right now, I'm down, and I just have to deal with it and try to get better.



Anonymous said...

Dear Erin.
I wish I had the words to put down for you. My heart is aching for you.
If I was able I would take the pain off your chest for a day. Just to give you some kind of relief.
I was at my step sons house the other day and he was telling me that his son who just turned one, fell in the pool. It took everything inside me to not yell at the top of my lungs at him. He does not know Aidan's story. I want to tell him about it so badly. That is my grandson who fell in the pool. He popped right back up and his dad grabbed him and he was fine. But it could have been so much worse. I was watching them interact all day at that pool. They are very aware of his whereabouts and vigilant with him near the pool. But even the best of parents can make a mistake. I believe you are one of the best of parents.
I am sending you a big {{{hug}}}. Please feel better, Erin.

Anonymous said...

I can't even imagine how hard this must be for you. You have every right to your feelings you are amazing I have read this from the beginning. Just know I am praying for your family.

Anonymous said...

Let Go


so easy to say
so hard to do
but we really must
for it all to be good


Oft it seems we live the life of JOB, but even his sorrows came to and end and he was richly blessed by God.

continue in faith, knowing God's ministering angles hover ever about you, sustaining you, so that you can do all things in Him.

Luke's Mom said...

I'm praying for you right now, that God will give you His amazing peace about your nightmare situation. I can say that some days will be impossible to get through and other days will be ok. Oh how I wish Luke's accident never happened, going through the mourning stage, anger stage, depression stage, acceptance stage, is on going. That said God has given me His amazing strength each and every time I've asked for it.

Just know that even though it's hard to imagine, Aidan is doing good, much better than so many just like him. I realize that does not bring much comfort, but perhaps it will bring some much needed hope.

Suzi Searles

Erin said...

I guess I just have a hard time seeing that Aidan is doing better sometimes. I feel like I'm grasping at straws to see anything new, any sign that there is a light at the end of the tunnel. Several people have said that Aidan is doing better and is moving faster than other children with similar trauma. I guess I just get so caught up in what we're dealing with, with Aidan, that I don't think about that. I don't think I could stand to move much slower. I'm an immediate gratification kind of person. Waiting for results and moving at a snails pace makes me crazy. I'm not exactly the most patient person in the world, and I hate being out of control. I just have to pray for patience and put it all in God's hands... that's like pulling teeth for me.

Anonymous said...

continued orayers for you all

Anonymous said...

Minute by minute Erin, that's all you can do. I'm praying for you.
Kathy Phoenix

Anonymous said...

I don't know you and Aidan except through your blog. My son turned 2 last week and I put myself in your shoes and I think I would be feeling exactly the same way... angry with myself and helpless and frustrated. I just want you to know it's so understandable and don't feel badly for venting your emotions. You are in a marathon for Aidan, not a sprint. It's bound to be exhausting at times and hard to see the progress made when you are so close to it. I'm so very sorry for all Aidan (and all of you, his family) have been through and will continue to go through but I pray God's peace and strength for you every day.