Makena's amazing story
Written by her Dad:
Makena had her first seizure in December of 2014 at just over 15months old. I rushed her to the ER but the Drs couldn’t find anything wrong. It wasn’t until almost a year later that she had a second one and they raised the red flags. We spent the next few weeks doing EEG, MRI and blood panels to see what exactly was the cause. Based on the electrical activity in her right frontal lobe, and the types of seizures she was having, they diagnosed her with focal epilepsy (broad term referring to seizure disorder).
We started her on meds in November 2015 and the rest is history. The following months would be a complete roller coaster of side effects including: panic attacks, emotional breakdowns, sleeping problems, behavioural issues and more. As time went on we found ourselves asking “is this the best we can expect?”. The Drs seemed hopeful that we could find a better mix of medicine so we tried a few things before settling on a couple that seemed to hold her seizures at bay.
In September/October of 2016 Makena became more and more fatigued from the medicine. It seemed to be affecting her sleep in ways in hadn’t before and we became concerned (because lack of sleep is one her main triggers for seizures). The Drs suggested we try different meds and once again we started the process of titrating from one medicine to another. through November the first part December Makena had more and more secure activity. Soon 1-2 seizures a day became the norm and we were just hoping it would all settle down. December 19th 2016 she has 9 seizures by the early afternoon and I wished her to BC Childrens Hospital. she would continue seizing all night while I sat and held her telling her everything was going to be ok.
The next day she had 15.
The day after that she had 18.
The day after that I believe it jumped to 25 but to be honest it got very blurry around this point.
The main challenge was that we were working with a different Dr everyday. Christmas is a really difficult time for some specialties of medicine when most of the Drs are on vacation and working one day here and there. in the first 9 days we worked with 6 different drs who all “the plan”.
We would implement “the plan”, things would fall apart, and then the next day a new dr would walk in with “the plan” and we would go from there. Now that I’ve had some time to decompress from this I can understand there wasn’t much we could do like that…but when you’re there with your child…and trying to advocate as best as possible…it was NOT ideal.
After a few more days like this Makena was still having >30 seizures a day and they were getting worse. She had a few episodes lasting 5mins and then escalated to 12 and 15minute seizures needing acute doses of rescue medication. This was our new low…A room literally packed with hospital staff all trying to help, but not knowing what would get her see relief.
One day (I can’t honestly remember which one) they administered a few doses of rescue med. She was still seizing and protocol said they couldn’t give her any more because breathing would be compromised. After seizing more they took her to the ICU. that day she had over 70 seizures in 24hrs..
Honestly, I didn’t think it could get any worse but each day was worse than the day before. By the end of day one in the ICU she was maxed on an IV drip of rescue medication and hooked up to a breathing and feeding tube…and still seizing. We were lost.
January 3rd finally came. The day we’d been waiting for..most of the Epilepsy specialists were back from vacation so we had a dedicated team working on her case. They quickly decided that she needed a surgery workup to remove the part of her brain that was causing the seizures.
Through all of this we balanced two sides of our emotions. Family, Friends, Nurses, Doctors all told us how lucky we were to be in such a great place…I didn’t feel lucky. I felt done. I was destroyed, emotionally exhausted, and completely burnt out. The other half of me did acknowledge (albeit briefly) that of all the places we could end up, I’m glad we were at BCCH.
Through our time in the ICU we became closer and closer with our nursing team. They each showed the highest level of care for Makena in their own way and we couldn’t have been any more comfortable given the circumstances. Lisa and I got into a groove with our makeshift schedule. I would sleep from 4/5pm until 1am while Lisa sat in the ICU with Aylee (who still wouldn’t take a bottle and needed mom), and then we would switch so they could get some more sleep. The nurses were amazing throughout. We slept in a rocking chair next to the bed and never had one complaint. If anything, they would remind us to eat/drink and get rest when they knew we were in for a quiet night.
After about another week in the ICU on support Makena was scheduled for surgery. They would remove a portion of her right front lobe to try and quiet down the seizure activity. We had an amazing surgical team and it still took >8 hours.
Over the next few weeks at BCCH we would encounter some of the kindest people we’ve ever met. Parents of other kids in the neuro ward, Drs, nurses, occupational therapists, physical therapists, volunteers, a musical therapist, and even a few dogs! Each and every one of these people reached out and made our time at BCCH as easy as it could possibly be. I can think of a dozen examples off the top of my head of times when the different staff at BCCH helped me in some small/large way. Whether it was help finding a pillow, getting Makena something she could eat, crushing the meds just the right way or even finding us a room to sleep in when we’d been moved to the ICU and had no where to go…these people go above and beyond.
It was the worst 7 weeks of my life, but it could have been so much worse without the kind people who make that place come alive. We had to go back last week for a scheduled EEG and Makena had mixed emotions. She was very hesitant to go back but once she saw some of her “friends” she was right back in her groove strutting the hallways and getting laughs. I couldn’t have asked for a better team.