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.