Our "good" streak on the anti-seizure meds Topamax and Depakote came to a screaming halt on April 29th. Out of no where- Elin had a seizure. She wasn't sick, didn't have a fever and gave me no indication she was about to have one. This of course is terribly frightening in itself, however the color of her skin was even more terrifying. Since this episode- Elin has had many more seizures. We have been in SCH ER three times and admitted to the ICU twice. Life has not been a bowl of cherries lately.
The good news if there is any is that Elin has not needed rescue meds to come out of her seizures this time around. They are lasting between 1-4 minutes and as soon as she STARTS BREATHING again, they seem to subside. Yes, yes, 1-4 minutes of not breathing. I have given my baby girl rescue breaths more times then I care to count and I could go the rest of my life never having to do that again. The medics and fire department have been frequenting our home and we have taken two rides in the aid car to SCH in the last month.
So why are they so different? No one knows. That's reassuring isn't it?
"Mean Pete" last day on the job
She had seizures in the hospital while she was hooked up to the monitors so the ER and ICU staff can see just how scary they are. I go in with her, saying she "turns blue" and they are like- ya ya OK. Then she has a seizure and desats (oxygen desaturation = meaning all the oxygen leaves her blood) within 30 seconds. They can watch it on the monitor and see it in her coloring. Both times this has happened they are frantically trying to bag her and get oxygen into her and they ask, "is this what she does at home?" And I answer- yes. Now they understand what I mean by blue.
Apparently this is unusual. It isn't unusual for a person to stop breathing or hold their breath when seizing but desaturating at that "profound" a rate is not natural. Just imagine holding your breath for 1 minute- most of us don't even lose the pink in our cheeks. So the neurology team turned to the cardiologists to help explain the mystery. The monitors in the hospital measure her heart rate while she has had these episodes and she continues to have a pulse so her heart is beating.... something else is going on.
During our most recent hospital stay we did an EKG and a heart echo, both of which (thankfully) yielded a perfectly healthy little heart. The terms "pace maker" and "pulmonary hypertension" had been thrown around prior to getting these test results back so I was very happy to learn she had a healthy heart.
She had her first breakthrough seizure 2 days after we returned from CA. We changed her meds and she seemed super irritable and her sleep was terrible. While in the hospital she did an EEG which resulted in nothing abnormal. Just under 3 weeks later she had her second bout of breakthrough seizures. This time was very similar to the last but her coloring was beyond horrible and I thought she wasn't going to come back to me during one of my rescue attempts.
So here we are again. Home with a perfectly happy, healthy little girl, until she stops breathing again. We are getting a bit more anxious to find some better ways to care for her in light of our recent scares. I can't keep breathing into my child in hope of her returning to life. This just isn't fair.
Two weeks ago we took a short trip down to San Clemente to stay with my parents. They rented a condo down there for a month to hang out with friends and house family members who wanted to come visit. Their location was perfectly located between Legoland and Disneyland both of which Anya had never visited before.
We made the most of our trip and went to both parks. I flew by myself with the two girls and Myles met us down there a few hours later that same night after some flight changes and battles with Alaska Airlines. As a funny aside and sparing you the details- when flying with both your children alone going to the bathroom on the airplane is quite the production. Since Elin doesn't stand on her own it was a comedy of errors in the mini stall with all three of us trying to fit and not touch all the disgusting airplane bathroom stuff. Anya and I came out giggling both times because the logistics of managing the "duties" were quite comical.
The weather was mild but on the chilly side for SoCal but we toughed through it and shivered our way through Legoland's waterpark. It was a really neat amusement park but was definitely designed for 4-8 year old kids. Older kids probably wouldn't like the rides that much but they were perfect for Anya. One small snafu was the height restriction. Some of the rides required the rider to be 42 inches tall. Anya is about 41 3/4...... so after being turned away at the "big" roller coaster she shed some tears. BUT then she got on a different ride that had a 42 inch height restriction so we folded up park maps and stuffed them in the bottom of her shoes and voila- she was tall enough to ride the Technic Coaster.
We gave ourselves a days rest between theme parks and headed to Disneyland on Friday. We left bright and early to catch the best (and least busy) part of the day at 8:00 am in the park. Straight to space mountain and Anya LOVED it. So off we went riding the big rides and standing in line. We were able to plan out our trip pretty well with lots of advice we had gathered from friends and family about how to best navigate the park. We rode the rides we knew she would like and avoided the ones that were either too scary or too boring or had WAY too long of a line. Some highlights were meeting the princesses- Cinderella, Jasmine, and Snow White, seeing a great play about Frozen (with a guest appearance by Elsa and Anna), the parade was amazing, and Tom Sawyer's island. We were there from 8 am until 7:30 pm. All of us were exhausted and I tracked our mileage- we walked over 8 miles- Anya did the whole thing without a stroller. It did rain on us off and on- I wasn't dressed for rain so I spent most the day shivering but the miles of walking seemed to help.
Where or where was Elin during all of our park adventures? My parents were amazing and offered to watch her both days so the three of us could go out and enjoy the parks without having to worry about her. One of the things I have been told by other parents of special needs kids, is to be a family of 3 sometimes. It is OK to go and do things without the special needs kid and spend some quality time with your typical child. We took full advantage of this and Anya really enjoyed the two on one time. Elin of course soaked up her two on one time as well with both her grandparents doting over her.
San Clemente is a super cute surfer town with great food and good shopping. It has a beautiful boardwalk that runs parallel to the beach and everyone is out walking, running, and biking along the sandy path. We even saw some whales out by the pier. Both flights with the kids were great- the girls really were amazing on the plane. The trip was a huge success and everyone had a fabulous time.
Apparently this is unusual. It isn't unusual for a person to stop breathing or hold their breath when seizing but desaturating at that "profound" a rate is not natural. Just imagine holding your breath for 1 minute- most of us don't even lose the pink in our cheeks. So the neurology team turned to the cardiologists to help explain the mystery. The monitors in the hospital measure her heart rate while she has had these episodes and she continues to have a pulse so her heart is beating.... something else is going on.
