Upon his return home for the ER, Boo slept for at least 10 years. He opened his mouth but not his eyes for his morning meds. Around 1pm he emerged from his room, both hungry and thirsty, which is a good sign. We did go for a brief walk to campus, as he likes to watch the college kids. Mostly he seemed happy to hang out at home. He slept well last night.
Today he seemed a bit ataxic. The post-ictal stage can be rough. Peter came by and took him out for pizza, which he happily ate. Returning home, he was restless. The battery life on both his iPad and Sam had expired. I felt like my battery life was at about 10 percent. To distract him from his devices which needed to charge, Robert and I took him for a walk. We stopped by campus and then walked down to the river. Jim was there playing his bagpipes and Boo stopped to listen. On the way back, he began walking more slowly. It seemed he was concentrating on where to place his feet. He was also tightly holding hands with Robert from me. About half a mile from home, it became apparent that he was truly struggling. He was staggering slightly, and his eyes had taken on an alarming shiny cast that can appear before a seizure. Robert parked us on a bench in the shade and went quickly home to fetch the car. Ten minutes later he pulled up and we got in. I began slowly administering sips of Coke to Boo. His face started to look better. Robert headed for the nearest McDonalds and got him a coke and some fries. I was guessing he was dehydrated and needed some fluids and salt. Though the fast-food chain is only 5 minutes from our house, Boo had completely slammed the entire coke before we pulled into the garage. He did not seem interested in fries but was very interested in a cool bath. Currently, he is happily curled on the couch with his dad, watching his beloved Sid the Science Kid.
It is obvious that I am going to have to watch Boo like a hawk in hot weather and not let him get dehydrated. I think that is what got us into so much trouble on Friday night. I have written a detailed letter to his case manager and team about how to handle and hopefully prevent seizures. Whenever Boo is away from me, my phone is always attached to me, in case a teacher or caretaker needs to reach me. Going into this school year, I had briefly entertained the notion of picking up a part time job while Boo is in school. I quickly squashed this idea Friday night. I already get paid a decent wage working for Boo 38 hours a week. This job gives me great flexibility within Boo’s parameters. This also means that if something happens to Boo while he is at school or with someone else, I have to be able to drop everything immediately and come to him. During the school year, I try not to be more than 15 minutes away from his school at any given time. Much as I would like to nanny again, or be a caregiver for someone else part time, this is not going to happen.
Thank you all so much for the care and well wishes we have received in the past 48 hours. It is good to know that Boo is loved in his little community. Give us a wave if you see us out and about and send him good vibes, please, as he enters he last year of public school. Be good humans, peace.
Harriet's Hedgehogs and Autism Advocacy 