This blog is pretty much a one-topic website this week and I’m afraid I’m not breaking the pattern just yet. However, it’s been a good day overall, so I thought i’d just make a quick update before popping off to sleep (lightly).
I took the afternoon off work yesterday afternoon to come relieve Michael at the hospital, who has basically lived here with Jade since last Friday. Although I slept very little last night, I had some respite this afternoon when Cheryl (from Jade’s daycare) came to give me and Michael a break for a few hours. God bless the woman! I went home and napped for an hour while Michael worked a minor miracle and got the kitchen looking somewhat presentable again.
In other good news, some of you may already know that we have a date with the pediatric neurologist and EEG in Vancouver next Friday. Since the original non-urgent referral was supposedly going to take 1 to 3 months, this seems amazingly fast to me, and I am grateful to Dr. Avery and Dr. Patel who pushed hard to get Jade down as soon as possible.
We’re also going to get some freedom from the hospital by tomorrow. Actually, if we’d wanted to, we could have been fully discharged by now, but Michael and I feel somewhat safer being at the hospital at night for now, so we’re going for the day pass option. After she falls asleep, they attach a sensor to Jade’s toe that monitors her heart rate and oxygen saturation levels and movement, so if she has a seizure in the night, they’ll come running. So far that hasn’t happened (and to be honest, the damn machine can get pretty annoying beeping when Jade is restless…) but it is a comfort. We’re starting to recognize that Jade seems prone to seizure in the morning between waking up and the end of breakfast, as well as in the evening after supper before bed-time; so perhaps fatigue is a trigger or a kind of vulnerable time. The good part is that if we start seeing a pattern, we can start feeling a little more confident about other times.
I’ve seen Jade have a couple of “mini” seizures, lasting between 5 and 15 seconds since I got here yesterday; I’m going to guess they’d have been stronger if not for the meds. It can take up to five days for the drug to build up in the system enough to get to “therapeutic levels”. Although it’s been just over that since she started the anti-seizure drugs, it’s only been three days since the increased dosage. Since the small seizures aren’t harmful, and not even too distressing now that we’re used to it, we’re just waiting and seeing how things go.
Thanks for your continued support and encouraging messages. I’ve stolen our modem for the night so Michael has no Internet access at home, but I’m trying to catch up from not having had access since lunchtime yesterday. I’ve read everyone’s messages and I’ll do my best to respond over the weekend . . . from the comfort of home, yippee!
