A Major Seizure...911

Friday night we went to a local Chinese Buffet for dinner. Jack looooves the buffet and watching tons of families eat (it's a big place and very busy). It was a great dinner...everyone was happy and Jack did very well eating noodles with a fork.

We got home and got Jack ready for bed. Around 8 pm we gave him his usual meds (Baclofen and Tegretol) and snuggled in to watch a little tv. Jack was totally fine but he seemed to be fighting sleep. It was around 10:30 pm. He was on the opposite end of the sofa and Jason was in the other room. When Jason came in the room I moved down to give him some room on the couch. I brushed up against Jack and he felt so hot. I actually pulled my hand away because it shocked me how hot he was! Jason ran for the thermometer and it read 103.5...the highest fever Jack's ever had that I can remember. He started moaning and we gave him Motrin right away. We took his temp again about 45 minutes later and it actually went up to 103.7. We then gave him Tylenol. That brought it down a little and at 1:00 am we decided to go to bed and take Jack with us to our bed. At around 2:30 am I awoke to a hot, hot, little body vomiting everywhere. He was shaken up and very hot. We did not have time to take his temp but I am sure it was over 104 or more. We rushed him over to the bath tub and Jason bathed him in luke warm water. After a few minutes Jack was playing in the tub as I stripped the bed. We took his temperature afterwards and it was 101 or 102 (I can't remember) but we weren't too concerned.

The adrenaline had everyone wide awake so we went downstairs to the family room to watch tv. It was about 3:00 am at this point. Jack couldn't get settled and he was bouncing around a bit on Jason's sofa. We noticed Jack started breathing heavily and I thought he was going to vomit again (we were prepared with a bucket and lots of old towels) instead he started grinding his teeth really hard. Again, I didn't think anything right away other than maybe he was chilled and his teeth were chattering. I asked him why he was doing that with his teeth and I asked Jason if he thought he could break his teeth that way? He sang part of the wheels on the bus song and then started with his teeth again. He was starting to stare at the ceiling and point to something we couldn't see up there. Jason handed him to me on my sofa and I had him in my lap. I was talking to him, asking him how he felt, and his head jerked to the left and stayed there. I asked Jason to try to get his attention and he couldn't. At this point I said out loud "I think he's having a seizure" and I placed him gently on the ground. His head and eyes were fixed to the left and his entire body started convulsing and jerking. Jason went to call 911 at 3:19 am and I stayed with Jack making sure he kept his airway open. There was a lot of drool and bubbles in and around his mouth. He was turning blue and his breathing was erratic and shallow. A police officer was first to arrive. I swear he showed up in two seconds. He was very nice and took Jack's pulse. A few minutes later two volunteers from the fire company came with an oxygen tank and mask. As they were placing the O2 on Jack the paramedics arrived. They assessed Jack and told me to go get my shoes and a coat. I don't remember doing this at all.

They carried Jack upstairs and out into the freezing cold night with just his little pj's on and an old towel covering his back. They got him on the ambulance and Jason sat in the back with them. They administered vallium (diastat) rectally and soon after Jack calmed a little but was still seizing. They also started an IV. It was close to 4:00 am and the ambulance took us to the med center.

I have zero concept of time from this point on. I know we arrived and they took his patient and insurance information and got us into a room right away. Again, what happened next is sort of fuzzy. They gave him ativan and took him for a CT scan. I think this is when I called my mom and Jason called his mom too. It was around 5 am. At this point Jack was agitated and kicking his legs but most likely out of the seizure. He still hadn’t woken up. We don’t know exactly when the seizure stopped but it was over an hour long and under two hours. I had no idea if he was going to be okay. I prayed he would be. They came back and told us the CT scan looked good. No bleeding or hemmorages or swelling of his ventricles. We talked to neurosurgery and they compared his scans to rule out a shunt malfunction. The ER doctor ordered tons of labs and it was then just a waiting game. I don’t remember when Jack started to wake a little but I think it was when neurosurgery was examining him. He scrunched his face and it was the first time I saw he was “in there.” They assured us he was heavily sedated and his reactions were normal. I felt much better after they left.

At this point we just needed to wait for the labs and the chest xray. They told us the lower lobe of his right lung had what looked like bacterial pneumonia — possibly from aspiration. We didn’t connect the dots until a day or two later — but 3 weeks ago during his apnea episode at CHOP while getting Botox he very well could have aspirated while they were suctioning him. So it all makes a little more sense now as to the sudden infection without any other symptoms like a cold, etc. General pediatrics came to evaluate him and said he may need to be admitted if his oxygen requirements remain high. (He was on 4 liters of oxygen). She weaned him down some and Jack hung out around 92% which was just at the acceptable point. She ordered more fluids through his IV, and also an antibiotic.

Grandma Linda and Brian came and took Jason home for the car since we both rode in the ambulance. I waited and watched Jack sleep. At this time I believe it was close to 11:00. We were waiting on our neurology consult and when the dr. came in I was so relieved! It was Jack’s regular neurologist!!! It was like seeing an old friend. We talked about what happened and he diagnosed Jack as having a Febrile Seizure. I explained how this was all so new to us. The type of event we witnessed before was just a small, small starting spell. Nothing like this. He said his Tegretol level was on the lower end of the therapeutic range, he has an underlying seizure disorder with abnormal eeg’s, and the very sudden onset of a high fever is what caused the event. He gave us a schedule to raise Jack’s Tegretol dose over the next two weeks. He also gave us a prescription for emergency seizure meds...it’s called diastat and it’s the same thing they gave Jack on the ambulance. We are to administer it if a seizure lasts longer than two minutes. This is somewhat peace of mind knowing we can do SOMETHING if this happens again.

Jason came back and I told him what the neurologist said and he took the prescriptions to be filled. General peds came back and took Jack off his oxygen all together and he did well. He was 93-94% for over an hour. He still hadn’t really woken up at all. I really wanted to stay the night — but looking back it really wasn’t necessary. We left with emergency diastat, antibiotics, and instructions to keep his fever down and to follow up with neurology and his regular ped within a week. Jack woke up a few hours after we got home and begged for food. We gave him some chicken broth and some pedialyte. He went right back to sleep and aside from waking every few hours to moan a little he slept all night (with us) on Saturday. His fever was still up around 102 and we rotated giving motrin and tylenol all through the night.

Sunday was a good day. His fever was down to 101 or so and he was playing and ate crackers, cereal, soup and drank lots of pedialyte. I asked Jason to stay home from work today (Monday) because I had to go for a cervix check this morning and I did not want to take him out at all and I didn’t want my mother to worry about watching him all alone while he’s still so sick. Today was a very mellow day. He’s been sleeping all day...I called the school this morning and explained what happened and told them he probably wouldn’t be in for the rest of the week. He was supposted to go to CHOP on Friday for a post botox check but I am canceling that as well and rescheduling for another time. My mom is free tomorrow to come over for a bit which I will be very grateful for.

We are tired but thankful he’s doing well. I am sure he’ll be sleepy for a few days as he heals and gets better. I am sorry if this was choppy and all over the place but I think I am suffering from a bit of post traumatic stress — I will keep everyone up to date. I am sure I left out pieces too and am forgetting exactly how things happened. Please keep our little man in your thoughts and prayers. He is getting better day by day.

PS — everything looks perfect from my check up this morning. So signs of preterm labor...cervix looks perfect. I’m 22 weeks on Wed.