Our big scare -- Ben had a seizure!

It may take me a while to get this blog finished, so I'm starting with uploading some pictures that Shiela and I took on our cell phones during our stays in the emergency rooms and Winchester Hospital and Children's Hospital and then during our extra day at Children's. I'll do my best to fill in the details as I have time (and energy).

In short.. Ben had a seizure last Monday, on Feb 4. It started at daycare and continued for close to an hour, which is atypical. He also didn't have a fever when it started. Other than that, all of his tests have come back normal and we have some upcoming tests later this month that we hope will continue to be normal. He may or may not have more seizures.. we just have to wait and see. In the meantime, we've been trained on how to administer meds if he does have a seizure and his daycare has their own seizure kit for him as well. After their quick action and compassion that was shown last week, there is no one that I'd trust with Ben more at this point in time (well.. aside from having him with me or with Shiela.. *laff*)..

ok.. here are the pics and bits of the story in chronological order:


I dropped Benjamin off at daycare Monday morning.. it was just like any other morning. He absolutely LOVES the new baby at daycare and was giving him hugs and kisses before I left. This was the image that I left daycare with:



At about 3:30pm, Shiela called me. She had me on one phone and the daycare on the other phone. The daycare had her on one phone and 911 on the other phone. It was quite chaotic. Our poor daycare provider is bilingual, but she was so freaked out by everything and worried sick over Benjamin that she had her son do the talking on the phone. As soon as I heard Shiela's voice I knew something was going on and it only took seconds to hear the words "hospital" and "ambulance" as I was putting on my coat and grabbing my car keys. Ben was having a seizure. We didn't know more than that. He was being taken by ambulance to Winchester Hospital (i've spent quality time there myself.. they practically know me by name.. sorta like Tim the toolman Tanner.. anyway...). I was off. I stopped in my boss's office long enough to tell him I was leaving and then bolted for the car.

I honestly don't know how fast I drove.. I know I didn't get stopped, I didn't run over any elderly or small children, and I stopped at all of the red lights (at least the ones I noticed). I called my mom on the way and had a mini-breakdown over the phone-- she told me to put both hands on the wheel and call her when i knew something. little did she know that I was probably hitting 60 mph on suburban side streets while on the phone. (i guess she knows now!)

I got to the hospital and flew up the ramp to the front door.. hopping out.. leaving the car running.. yelling at some dude in a Winchester Hospital jacket that I needed it parked. He managed to throw a valet parking ticket at me before I passed him by. He could have been some joe schmoe off the street and would have had a brand new minivan for all I cared at that moment.

I actually arrived at the hospital before the ambulance did. This made no sense to me until I learned this morning from the daycare provider who traveled in the ambulance with him that they stopped a few times on the way to administer different meds or attempt to at least. They could find an IV, so they ended up having to shoot a line into the marrow of his calf bone. That's an image I'm glad I didn't have to see... but it let them get him the meds he needed.

I saw the ambulance drive in and went back to the desk and said "i'm going back.. he's here". she calmly said "yes ma'am.. let me just be sure that this is Benjamin before we go back there". She went into the back and came out two minutes later to buzz me in.

When I got to his ER room, nothing could have prepared me for what it was like to see my little baby surrounded by a doctor and about 8 nurses STILL seizing and being worked on by the medical team. They were going through a protocol to stop the seizure and hadn't had any luck yet. In the end, the seizure lasted at least 45 minutes although I think it was more like an hour. It was a good 20 minutes after I got there when the seizure broke. The tension relief in the room was so significant that you could practically touch it.

Three of the daycare crew were there with me as was a woman I work with to provide support for me until shiela could get there. She was taking a cab from her work and was stuck in traffic.

Ben continued to exhibit some "posturing" for about an hour after he stopped seizing. His legs were stretched out and clamped together with his toes pointed down. His arms were also clamped tight to his body with his fists tight and turned in.

Over the next hour or so, Ben had a CT Scan, a chest x-ray (which showed that he had aspirated some saliva during the seizure) and a lumbar puncture. Unfortunately some of the sedation from the meds they gave him had started to wear off by the time he had his lumbar puncture, so he did scream when they inserted the needle -- but the doctor was actually happy about that.. it meant that he was responsive, which is good.

Once Ben was stable, they arranged for us to be transferred to Children's Hospital in Boston. Ironic, because it is within walking distance from Shiela's work.. and she had just torn across town in a cab to the community hospital only to trek back downtown later that night.

Here is a picture of ben that was taken shortly after the seizure stopped. He had not regained consciousness, but was responsive and his arms and legs had relaxed by this point.



A bit later -- we managed to ditch the oxygen mask (he wouldn't keep it on even though he was barely awake) and he fell asleep waiting for the ambulance to transport us to Children's.



Once we got to Children's, the wait was on. I rode with Ben in the ambulance and Shiela managed to find our car and went home to get some clothes and things for us since we had been warned that we'd likely be there a day or two. We arrived at Children's Hospital ER at about 8PM. By about 1AM, Ben finally fell asleep cuddle with his Mamom on the hospital gurney.. don't they look comfortable?



At about 4AM, Ben had another chest xray (THAT didn't go over well) and we were transfered to a room. Since they normally only allow one parent to stay with the child (like hell they could have gotten either of us to leave).. they said that one of us could sleep with him in the crib. It turned out that the only way he would sleep was either with me in the crib with him:



or while laying on one of us:



The rest of the time, he basically screamed. He was tired, hurting, terrified, confused, etc.. it was horrible given that he was too young to understand any of what was going on. Here is a picture of him during a rare quiet time when he was playing with a car in his crib:



We also took a walk down to the "Activity Room" on our floor and Ben played for a bit with their cars. He liked putting all of the hotwheels little cars into Barbie's big pink VW bug. He tired quickly and we headed back to his room for the remainder of the day.



He finally took a nice nap in his crib by himself while Shiela and I ate dinner (our first meal since the start of all of this.. aside from snagging jello and chocolate ice cream from the floor's kitchen).

The neuro team saw him a few times that day and they tracked his stats all day and decided to discharge him that evening (Tues). We were given a seizure kit with meds to administer if he should have another seizure and he will be having an MRI and an EEG once his brain has had a few weeks to recover. Then we have another consult with the neuro team at Children's and will go from there. Our pediatrician saw him on Thursday night and made us feel relatively confident that the remaining testing will not likely show anything since he has made a full recovery and has not had any more or any different symptoms. We're going with that.

Here is a picture that was taken on Wednesday, the day after we came home. He has his own program on my computer that does ABC's and 123's.. it felt good to be home!



Now that a bit of time has passed (it's a week from when all of this happened), I'm happy to say that Ben continues to improve by the day and seems to be back to his former self, both in spirit and in mobility/development. We have some testing ahead and he still has to get tubes in his ears.. but we'll take it one day at a time. Right now, it's 5pm and I'm ready to go pick the big guy up from daycare!