Yesterday started with a whole bunch of good news. First, the viral and bacterial tests performed on Leo’s blood and spinal fluid came back negative, so the were able to take him off the medications entirely. They kept a slow saline drip going to keep his vein open, just in case they needed it again.
The paediatric neurologist paid him a visit, and gave him tests to check his muscle tone, reflexes, following of motion with eyes, response to sounds, etc. He passed all of them. The neurologist said she doesn’t think he has any brain damage, but an EEG scheduled for the afternoon would tell more. Leo still wasn’t acting as alert or sharp as he usually does, and his noises and “talking” were a bit different. The brain doc told us not to look for “normal” for another 5 days.
Just before I left to go to work, he sort of zoned out with his eyes turned to the left, and neither Claire nor I was able to get his attention for the next 20 or 30 seconds. Scared again, I ran to get the nurse. He then did it again when she was there, but for less long. We later heard from her that she phoned the neurologist and reported this seizure-like activity, and had heard back that it may be a normal reponse to the phenobarbital left in his system.
I had to go to work for a client meeting, but returned to the hospital in time for Leo’s EEG. Due to hospital regulations, I had to be pushed in a wheelchair while holding him. Leo and I grinned at each other the whole way to the lab.
He was calm as the technician put the gooey conductive stuff on his head and attached the sensors to measure his brainwaves. She gave me this nifty spinny toy that made sparks inside when you pressed its button. Leo was captivated by it. He smiled a lot at us during the test, and didn’t zone out again for the 20 minutes it lasted. The technician told us everything looked normal.
Yay! We were free to go home. To our house, that is, not his room.
Last night, Leo kept smiling. He’s hardly cried at all since the last IV insertion attempts on Monday. Claire I were thrilled to have him home. It became evident, though, that a good night’s sleep won’t be ours for a while yet.
Leo’s still not really acting like himself yet, so we’re watching him like hawks. We know what the neurologist said about waiting 5 days for “normal”, but I can’t help but read meaning into everything he does. I know, it’s silly, but I can’t help it.
We’ve got the baby monitor going in his room so we can hear him when he’s in bed. At the first sign of any noise, one of us is in his room instantly. A couple of times now, he’s woken up and made a few talking noises. We get there and he’s just serenely watching us.
When I was changing his diaper, I realized as I tried to put the poo-filled drippy thing in the trash that no one had replaced the bag in the can. Not wanting to leave Leo unattended on the changing table as I replaced it, I called out to Claire: “Can I get some help here, please?” She sprinted up from downstairs with a panicky “I’m coming!” and burst into the room with a wild look in her eye, only to find me there holding a stinky diaper with Leo smiling up at her from the changing table.
“Sorry,” I said sheepishly.
We’ve temporarily suspended the “cry it out” method of getting him to sleep. Not that he’s crying, but we can’t bear to see him unhappy right now. I danced him to sleep, but he opened his eyes when I set him in his crib. I sat there with his hand wrapped around my finger, caressing his head with the other hand until he closed his eyes again 15 minutes later. Normally, he’d be enraged and screaming at me for daring to set him down. Funny, I never thought I’d miss that.
At 3am, I heard his voice through the baby monitor, and I awoke with a rapid pulse to go to this room. Leo was awake, but not in trouble. I changed his diaper and brought him in for some “mama juice”. Like last Saturday morning, he didn’t want to lay quietly and fall back asleep after the feeding and subsequent burping, but this time I picked him up and took him to the living room. We bounced on the exercise ball, watching the American election resuls come in. Annoyingly, the sound wasn’t working, but I didn’t do anything to fix it. (If you think the US electoral system is confusing, try watching poll results without a voiceover.)
He remained wide awake and chattering until I danced with him to some of his favorite music and then sat next to his crib for another half-hour.
I went back to bed, but sleep came in fits and starts. I had all sorts of bizarre dreams, and I woke up a couple of times, thinking I’d heard something, to see if the sound level meter on the monitor was moving. It wasn’t. All of the nighttime sounds in the house crowded in on me: the furnace, the fridge starting, and the soft noises the heating ducts make when the heat’s off and they start to contract.
When I finally realized I was asleep, it was because it was 8am and Leo was talking again. Oh, well.
I’ll keep you posted as Leo continues to improve, and as Claire and I become complete basket cases.