This boy is one heck of a survivor! Colby’s stroke was 6 years ago today which is so hard to believe! I remember not being able to think 6 minutes ahead of where we were at. It was impossible to think 6 years down the road. For a couple of days we weren’t even sure he’d make it 6 days let alone years.
In the last year he’s decided to throw me a few more curve balls. March brought 5 seizures. The last three weeks have brought withdrawals from his seizure meds which were causing him huge amounts of pain, aggression and anxiety. I’ve pretty much decided that Onfi is a horrible drug to be on. At first it seemed like a good thing but after a week or two on it it was awful for him. We’re taking him off of it with full support from both his Neurologist and his Rehab doctor.
Colby’s decided he absolutely hates school. If this summer hadn’t been so rough from him not sleeping and me losing his nurses I’d seriously consider homeschooling him. He’s happier at home but honestly two and a half weeks from school starting back up again and I have to admit I’m really excited for school to start. I’ll be able to take a nap which will be really nice. Today I got to sleep for about an hour and Colby actually managed to fall asleep on his own with no meds for over two hours.
Colby’s been up every hour and a half all week long. His heart rate and blood pressure all are crazy high again because of the withdrawals from the Onfi and I’ve had to go back up on his clonidine levels to compensate for that which will eventually cause more rebound hypertension. Good grief no wonder the blonde streak of hair I’ve always had has turned noticeably gray over the last four months!
Enough about all of that though. For the last six years I’ve spent this day thinking about how things have changed for us. Today I want to focus on prevention or catching a stroke. Pediatric Stroke happens a lot! More than most people know. The signs are still the same so it’s good to know for adults and children. Unfortunately for Colby knowing the signs wouldn’t have helped him because he was already so sedated from the e. Coli complications we didn’t have an accurate picture of what was going on.
The acronym for spotting a stroke is FAST. If you or someone you know is showing:
F - Face drooping
A - Arm Weakness
S - Speech Difficulty
T - Time
Get them to the hospital as quickly as you can!
As far as pediatric strokes go here is some good information on it.
Before Colby had a stroke I had no idea that kids had them. It was a problem for older people. Something to worry about as we got older. I could never have imagined the things Colby would go through when this was him literally a month before his stroke.
The thing is, is that it did happen and I can’t change that. I’d take his place in a heartbeat if I could but again that’s not possible. So instead I’ve decided that my job is to not only take care of him and be an advocate for him but to spread awareness. If another child or even an adult receives faster care because of something I’ve written it’s worth it. John and I have said from the very beginning (like within the first hour after being told he’d had a stroke and being asked if we would participate in several stroke studies) that if one person can learn or be helped by our journey through pediatric stroke recovery it will have all been worth it. So as we start the seventh year on this path I can look farther and farther ahead. I can see past the moment and enjoy not only the good times but the trying ones as well. I’ve learned that the hard times bring better good times. That even on the hardest most stressful days there is good to be found in them if we look hard enough.