Saturday, September 29, 2012

Long Week

It's been a week since I last blogged and what a week it's been! I'm pretty sure I've aged a good 10 or 15 years (my face may really be caving in now). Warning: this won't be a funny one.

On Monday afternoon, I was having my lunch while the kids napped when I heard Rylan scream. I ran into his room to find him vomiting in small bursts and yelling this strange guttural yell between times. I took him to the bathroom and after he was done, I cleaned his bed and laid him back down. He immediately went limp and seemed to fall asleep. About 45 minutes later, he woke up and did the same thing. I ran back in and helped him to the bathroom. As soon as he was done, he went limp and closed his eyes and started to make a strange twitching motion with his arms as if he was brushing flies off his face. I spent several minutes trying to rouse him, but he would not open his eyes or move except to twitch his arms. Needless to say, this scared the pants off me and I called the pediatrician who said to bring him in right away.

By the time we got to the doctor's office, Ry had opened his eyes and was acting fairly normal again, though he was trembling and a bit sleepy and upset. The doctor examined him and said he probably just had the stomach flu though it was possible he either had an intestinal blockage or was having seizures and if he threw up and went limp and unresponsive again, we should take him to the ER.

At about 7 p.m., Ry fell asleep on the couch sitting up. This was extremely unusual for him as he usually has a lot of trouble falling asleep. Dylan picked him up to take him to bed and Ry opened his eyes and stared straight ahead. This was also unusual since he has nystagmus which means his eyes dart from side-to-side almost constantly. I said to Dylan, "I think he's having a seizure," and as soon as the words were out of my mouth, Ry's eyes started blinking rapidly and then rolled back in his head and he went very stiff and started breathing in a deep, grunting sort of way. Then, he went limp and his eyes shut and he started to make that twitching motion with his arms again. I practically shoved the two of them into the car to go to the ER, and only when they were gone did I think, "Gee, I would have liked to go with them..."

Luckily, I have very good friends, one of whom left in the middle of a class to drive across town and pick Pippa and me up and take us to the Children's Hospital. By the time we got there, Ry was already back in a room. Turns out he had made a spectacular entrance by throwing up all over his father, himself and half the ER the minute they got through the door. That combined with the fact that he's non-verbal and autistic and a nurse's misunderstanding of his nystagmus (she thought it had just begun with the seizures, which would signal a very bad brain injury or tumor or somesuch) got him jumped to the front of the line.

We were in the ER for about 4 hours while they ran a CT and bloodwork on Ry. The CT was clean, but the bloodwork showed some possible seizure markers so they decided to admit him. By that time it was nearly midnight, so Dylan and Pippa went home and I stayed with Ry. About half an hour later, I was giving a nurse his entire medical history (which took about as long to explain as it did for us to live it) when Ry opened his eyes and stared straight ahead again. I said to the nurse, "He's having a seizure," and pulled the emergency cord out of the wall. I felt so weirdly calm at that point. It was only when 5 nurses and a doctor ran in and started putting an oxygen mask on him, holding his airways open, shooting him up with Ativan and barking questions at me that my legs started to shake and I felt like I was about to cry or faint. He came out of the seizure a few minutes later but not until half his face had turned blue which was utterly terrifying. Luckily, the doctor was able to confirm that he did have a seizure, so they put in a call to the on-call neurologist and he ordered an EEG for the morning.

I got about 2 hours of sleep that night. Every time Ry moved I jumped up convinced he was having another seizure, but he was fine. In the morning he was sleepy and grouchy because he wasn't allowed to eat or drink in case they had to sedate him and he kept trying to pull his IV out so he ended up with tape halfway up and down his arm to keep it in, but otherwise he seemed fine. They took him for the EEG around 11:30, and said the on-call neurologist would read it and come talk to me. We waited...and waited...and waited...and nurses and nursing assistants came and the hospital dietician came to pester me with about 1000 questions about what they could send him on his meal trays since he has so many food allergies and he's on the autism diet (hospital cafeteria food is ironically the least food-allergy-friendly food on the planet), but no neurologist. He didn't come until 6:45 p.m. at which point he said that the EEG looked normal and asked whether we wanted to be discharged with meds or run further tests. Um...my kid just had 3 or 4 seizures out of the blue, yeah, I want more tests. So, he agreed to run a long-term EEG the next morning with the idea that we'd run it all day and then maybe run an MRI and be discharged the following night...

...except they didn't come to get Ry to hook him up to the EEG machine until mid-afternoon the next day. To his credit, the neurologist showed up shortly afterward this time and said he'd like the test to run all night and we could go home in the morning. Poor little buddy got about 4 hours of sleep that night because he had EEG leads glued to his head and a cap of gauze and tape over it and he was on camera as they wanted to see his movements so he couldn't move much or I had to come put him back within the camera's range.

The next morning, the neurologist came and talked to us. He said he'd reviewed the MRI Ry had as a baby and it looked normal, but the fact that he had so many seizures in a row without having a fever or being sick was worrisome and an indication that once his brain gets into that pattern, it will just keep going. That coupled with his autism (a certain percentage of autistic people have seizure disorders) made him fairly certain that this wasn't a one-time fluke and would probably happen again. We agreed to do a trial of medication and picked one that has no cognitive or behavioral side effects. They finally came to take the EEG cap off of Ry around 3:30 and we were discharged at last about 4:30 p.m. on Thursday. We won't have the results of the EEG until next week.

Phew. So. You see why I didn't blog this week! It was a fairly scary week, but it had its good moments as well. While we were in the hospital, our therapist called to tell us that, against all odds, we won our insurance appeal! So we get all 30 of Rylan's monthly ABA hours back! I consider that to be nothing short of a miracle and just about the best news I've received in years!

Also, on Wednesday night, Ry was very upset. He was crying and pulling at his EEG cap and flailing around his bed. I could tell that he was just incredibly uncomfortable and wanted to go home. I could see the read-out from the EEG machine, too, and the lines were dark and full of sharp peaks. I crawled into bed with him and put a hand on his belly and started to sing his lullaby, "Sweet Baby James" and I got to watch as the lines on the EEG read-out settled down into gentle waves as he relaxed and snuggled up next to me. Sweet electronic validation of my parenting skills, haha.

Hopefully I'll have something funny and silly to blog about next week, but for now I'm just glad to have my boy home and to know what's going on with him.




5 comments:

  1. I'm so sorry that you had to go through this but SO glad that you got your therapy hours back!!

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  2. Hooray for therapy. But for the love y'all just need a really good vacation. <3 Lots of love.

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