It happened. That's right! Our 3rd ever family vacation!!!!!
I can't believe the list I had for packing. Well, actually, it's Jack's list that takes up an entire page.
Jason and I took the family to visit my side of the family and then to an indoor waterpark.
Visiting Family:
We started out the trip traveling to my parent's house. Everything was superific! Seriously! We had a great visit with my family! I had a wonderful conversation with a blog follower who happens to also be my parent's neighbor! It was nice to talk to someone who knows Jack through this blog and had the pleasure of spending some time with him. He was very pleased to see that Jack was full of joy. I don't think about it, but Jack really is a happy child. He has his moments when he is what we like to call "Angry Jack" but there are many moments when Jack is just, well... happy. By the way, "The banana bread was delicious!!! Thanks!"
While at my parent's house, Jack and the kids got to see my sister and her family, as well as my Aunts and parts of their families. Jack seemed to enjoy the busy environment. Then again, he spent most of that day playing with toys, ignoring the chaos! This doesn't really surprise me. He likes to keep to himself. We spent our first night since 2011 in a hotel. The last time we stayed away from home, Jason and I attempted to have Jack sleep in a pack n' play. That was the night when Jack didn't sleep the ENTIRE night and mainly screamed. To avoid a repeat, and also for safety reasons, we placed the sleeper sofa mattress on the floor. We covered it with extra blankets (Jack's diaper leaks overnight and we didn't want to chance 'feeding the mattress formula') and surrounded the sides not against the sofa with pillows. The first night went well... Jack moaned and whined like he usually does.
I know you're thinking, "And then what happened?"
1.) Not even 5 minutes before some relatives arrived for a dinner party the 2nd day or our trip and visit with my family, I noticed that Jack was poopy so I carried him to an ideal changing spot. As I placed him on the floor, I discovered a blowout all down Jack's leg. I looked down at my waist, hip, and leg. "Yep!" I had poop all over me. "Just what I want my family to see." I got both of us cleaned up and our clothes changed (at least I was able to wash our clothes). Anyway, after that experience, the day went nice and smooth. We ate. Jack tasted. We talked. Jack jibber-jabbered.
This is when you say, "Well, that didn't seem too bad. Hope the rest was nice and simple." Well...I'll get to that later.
Family Vacation:
Sunday evening I drove the family to Grizzly Jack's Grand Bear Resort. It's an indoor waterpark and indoor amusement park. We set the room up for Jack just like the night before. After a couple hours of relaxation and Spongebob marathons on TV, it was bedtime. Jack was medicated with his Clonidine (the pill that helps him sleep) and we all went to bed. Everything went as usual. Jack moans out of discomfort. Jack cries for his froggy. Jack calls for me (actually, this one is fairly new). I was up and down for several hours. Then 'it' happened. Jack had a seizure.
I knew it was a seizure right away. It was dark in the room. The only light I had was the soft blue glow of the screen from the charging feeding pump and the distant yellow from the cracked bathroom door. Jack was screaming a scream I haven't heard since 2010. I grabbed my phone and sat in the dark next to Jack on the mattress on the floor. His arms and legs, simultaneously, began to jerk. I glanced at the time. 1:42am. Katie woke up and was crying. I called out to Jason and asked him to calm her and made him aware of the situation. I attempted to record video of the seizure for the neurologist but the light was just too bright. Not worth it. I continued to watch the time. Three minutes have passed. Jack is still seizing. I picked him up. His eyes were wide open. He was screaming. His arms and legs jerked on and off. No change. I placed him back on the bed. He rolled on his side and continued to seize. Four minutes. Five minutes. Should I call 911? He's breathing. He's screaming. Of course he's breathing. He isn't hurting himself. Does it hurt? Why does he scream? I don't want to go to the hospital while on vacation. Six minutes. It starts to slow, quickly, and what seems like out of nowhere, Jack says, "all done," and "go away," and falls fast asleep.
This is what I wrote once Jack was asleep. I needed to have a script to follow when I talked with neurology in the morning.
~1:42/1:43am (Monday) 5-6 minutes. Screaming. Quick jerks of limbs. Trunk/head not involved. Jerks every 2-3 seconds. Like being zapped with electricity. Blood curdling screams. Slowed down jerks at the end. Calmed quickly. rolled over to belly and went to sleep. Next day/morning-pale. Tired looking. Very clingy. Only wants mom.
I called neurology first thing in the morning and informed them about what happened. They spoke to the doctor and then called me back. The neurologist wanted labs drawn but said that we could wait until we returned home from vacation to have an
EEG done. So, on our first full day of vacation, Jason and I took Jack and Katie (so she could nap during the drive) to a nearby hospital to get some labs. To clear that sentence up, Jason's parents came along on our vacation to help us out with the kids. It's like they knew we'd need this sort of help! They stayed with Evelyn, who made them swim, and swim, and swim...
The remaining two days of our vacation went nice and smooth. Monday was a hard day because Jack was pale and clingy, only wanted me, and was very whiny. Tuesday was great! Jack was filled with energy! He went in the pool several times and had such a good time! Wednesday was good as well! We spent most of that day in the van and at home cleaning up. Jack was happy!
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| Time for milk! |
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| Jack's favorite place! He was very happy in the toddler pool. He scooted all over! |
The Lab Results:
I got a phone call with the Lab Results on Tuesday. Everything was within normal limits. What does this mean? Jack isn't sick. Nothing that was tested from the
CBC (Complete Blood Count) and
BMP (Basic Metabolic Panel) caused the seizure. I wasn't very happy about that...
The EEG
My mom drove down to us on Wednesday night to stay and get Evelyn to and from school and to keep Katie home. I didn't want Katie in the room during the test. She might be too distracting to Jack! Probably the other way around, but it was just easier.
The night before the EEG I made sure to keep Jack up late. I also woke him up early. The patient needs to be tired, especially for the sleeping portion. He was NOT HAPPY that I woke him up. I prepped Jack for the EEG by calling it a head test (I told him we had to go to the hospital for a head test. I let him know that he would have little stickers all over his head and the stickers would have strings on them). Did this work? Sort of. We kept Jack in his wheelchair during prep. I had to hold his hands while also playing music and games on his iPod, or 'little iPad' as he calls it. Jack screamed the entire time the electrodes were being glued to his head!!! Big surprise? No. Jack did settle down once the gauze was wrapped and taped on his head. I told him this was a hat. I removed him from his wheelchair and we climbed on the bed. Did he like this? No. He wanted back in his wheelchair; his safety zone. I placed Jack on my lap and attempted to have him look at the tech.
The first part of the test involved having Jack close his eyes for 20 seconds. Was this easy? No! Does this surprise me? No! I had to cover his eyes while he battled me. The second part of the test was a strobe light. The light flashed at variable speeds, on and off, for a few minutes. Did Jack like this? Sort of! He said, "Chuck E Cheese!" I had some trouble getting Jack to look at the light the entire time. The room was dark and the light was bright. Jack + bright light = not that great. The third part of the test was the sleeping portion. Jack was supposed to go to sleep. Did he? Yah, right! The room was dark. I had soft music playing. Jack sat on my lap and his legs straddled me. I tried to coax him into laying his head down. Did he sleep? No! Instead, Jack talked the ENTIRE TIME. I'm sure the tech was entertained as she watched us on the video camera!
Once the EEG was finished, everything was taken off Jack's head and he was washed up a bit. We packed up and headed home.
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| Extremely comfortable on the way home! |
The Results:
I called the neurology clinic first thing Friday, the day after the EEG, and let them know that the test was completed. I knew it was bad when my returned call was from the neurologist instead of the nurse.
To cut directly to the point, there was a difference between the EEG from 2010 and the one on Thursday. The EEG showed abnormalities in the front left lobe. With all of Jack's developmental delays, his syndrome, his seizure history, and the EEG results, Jack has a 90% chance of having more seizures. We discussed our options after talking about why the seizures have happened. Medication was recommended but not necessary unless Jack has another seizure. It is not likely that they are caused by heat or humidity, but it is possible. Some people have seizures when certain words are said or when they are touched a certain way. It's more common to seize from illness or lack of sleep.
The Plan:
For the time being, I'll have a rescue medication,
Diastat, available if Jack has a seizure that lasts longer than 6 minutes, the length of his most recent event. If, after giving Diastat, and Jack still seizes for 5 minutes more (a total of 11 minutes) we must call 911 or drive to the hospital. We won't get Keppra prescribed unless/until Jack has another seizure. I'm hoping that Jack is in that 10% and he'll never have another one. If he is at 90% risk, I pray we have another 3 years before those ugly seizures show their face.
