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Day 4 (Sunday).. no real sleep since Wed night. Here's the story:

Thursday -- he had an awesome day at daycare.. played outside ALL day. after i picked him up.. we went to the park and played for a while.. then we picked shiela up and went to get pizza and he had a full piece and a glass of milk and some veggies for dinner and then we started to settle in getting ready for bedtime. we usually watch an episode of thomas, but i was going to lose it if i heard the theme song one more time, so we opted for dora (i know.. how is THAT less annoying?!).. he was resting on shiela's chest and was very lethargic.. he was just laying there watching tv. he doesn't typically do that.. he's always fidgety and will end up getting down to play. he watched the full half hour.. still not feeling warm or anything.. and shiela and i put him down in bed.

about 5 minutes later he realized that he hadn't finished his nighttime routine (no tippy of milk and he wasn't in his jammies) and he got up and was chatting with his doll in the crib. he chatted for about 15 minutes. i got his tippy ready and shiela went in to rock him and let him have his milk and get him changed. as she walked into his room, he was still chatting, but then stopped. she had her back turned to him because she was getting his jammies and a fresh diaper and all that.. when she turned around, he was seizing.

she called me and i launched off the couch almost throwing my laptop and ran into his room grabbing his seizure kit and the cordless phone on my way. by the time i got to his room (our apartment isn't big) i had already called 911 and the ambulance was on its way. the timing on the seizure was tough because we don't know exactly when it started.. but it was about 5-6 minutes. we were just getting ready to give him the rectal anti-seizure med when we heard the squawk of the ambulance outside and opted to wait for the paramedics. they whisked in and whisked us out and into the ambulance in just seconds. ben's seizure broke at about the time the paramedics arrived.. it was a relief that it broke this time on its own. about 2 more minutes of jerking and him not quite being responsive, but by the time we got in the ambulance, he was back with it. i got strapped on the gurney and held him on my lap. they tried to get an IV line going on him once, but opted not to try again since he wasn't showing any signs that he was getting ready to lapse into another seizure. he had pink cheeks and was a bit warmish.

we opted to go straight to children's since his medical history is all in their system and his neurologist is there (and because it's children's). they were wonderful, as always. the one big downfall was that we didn't have his binky. that probably created the worst trouble from that point on. we didn't get a room, they were so busy.. but it was ok because our hallway was pretty quiet. they took his temp in his ear and it was 99.. they did it again because the head nurse didn't believe it.. it was still 99.. so they took it rectally.. it was 99.2. leave it to ME to have a kid that is sensitive enough to have a febrile seizure triggered by his temp "spiking" to 99.. sheesh!

they gave him tylenol and his temp dropped down to normal before we were discharged. they checked his ears out and got a neuro consult and watched him for a bit. we tried out every type of binky that their "comfort cart" had and none of them were right.. the closest was a bright pink one that he'd at least accept SORT OF. he still wasn't happy about it. we got him to fall asleep, which made things much easier.. except usually someone would come and check his ears every time he fell asleep (it was like a huge red flag that he was just 3 weeks post-op).

they discharged us at some point and we headed home. i was blown away by how many sick children were waiting in the waiting room... poor families.. all the kids were so sick and i knew that they were so booked they had patients lining the halls.

at home, when ben saw his crib, he got all happy and the first thing he did was chuck the pink bink and grab his own bink and put it in his mouth and settle right down with his butt in the air and his hands tucked under him. we set our alarm and gave him tylenol/motrin alternating every 3 hours overnight "just in case" and he didn't start running a real fever until this morning around 10am or so on Friday.

Friday: Today ben is sick.. he's been running a temp of around 101 all day even while on the tylenol/motrin alternating combo. his ears are definitely fine.. at the ER last night they double checked them to be sure there wasn't a secondary infection from the surgery and to be sure he didn't have a fresh ear infection. It's all clear. He HAS had a stuffy nose for a little over a week.. so we're thinking that he might have a sinus infection or that it could just be a virus. Our plan is to go through today and tonite and if he's still running a temp while on the tylenol/motrin tomorrow morning, we'll be going in to see his pedi.

today has been rough.. first.. he's sick.. so he feels crappy. second.. he's coming off the seizure.. so he's unsteady on his feet.. so he falls more than normal and since he feels crappy.. this sucks. third.. we're exhausted from watching him like a hawk all day. we were fairly convinced that he was going to have another one at one point this morning as he got very lethargic as his temp was rising during the half hour before his next motrin dose.. same thing happened this afternoon with about the same timing and his eyes got glassy.. so he was definitely getting ready. we're changing from giving him the tylenol and motrin every 3 hours as recommended by our pedi because it's easy to remember to giving him his motrin every 6 hours and giving him tylenol 4 hours after ever motrin dosage so that the tylenol is at it's peak during the time where the motrin is at it's lowest. we'll see if that works better. for the night last night and again tonight, we're setting the alarm so we can keep the med stream going. my hope is that his temp will be normal tomorrow and we can start easing off the motrin/tylenol and hopefully it stays normal. regardless.. it's all scary.

so that's our story. we're waiting to find out when our follow-up will be with his neurologist. the neurologist had a note in the system saying that if he had another seizure he wanted him to be seen again to possibly be put on an anti-seizure med given the atypical aspects of the seizures (i.e. no real warning). so his next available appointment is in june.. so his assistant is doing whatever magic she can do to find a way to double book us in to see him asap. in the meantime, we need to figure out where his fever is coming from since he didn't have it in the hospital last night. my guess is that he'll see his pedi tomorrow morning and will probably end up on a course of the pink stuff.

we're exhausted.. but managed to go out for a ride and picked up the video monitor after talking with sheri.. i rigged it up when we got home and it's WONDERFUL. we're hoping we'll be able to sleep better tonight.

i'm happy to report that both of us switched into super-mom mode when the s*** hit the fan and neither panicked or anything throughout the entire incident. i had a few tears about it earlier and have popped my share of advil to take the edge off my tension headache.. but overall we're doing ok. let's just hope we can get through the remainder of whatever he's got brewing without another seizure.

Saturday: Things were fairly stable on Saturday. I went out for my second round at another MOT sale and snagged a nice bike trailer and an elmo chair that ben AND the cat love. Ben was still a bit unsteady, but was eating and drinking well and his temp was normal (while still on the motrin/advil). We even went to the park for a bit.

Saturday Night: Things took a nose dive. Shiela woke Ben to give him his Motrin at 11pm and he was warm so she took his temp... 101.9 degrees. She gave him his Motrin and took care of him while I was otherwise occupied.

side note: i'm either struggling with my own virus or the evil lizard spit was kicking my bum because I was busy puking while Ben was getting settled back down. I was also up at least 3 to 4 times an hour losing it the other way, if you know what I mean.

Ok.. back to the real story. Ben basically never really fell asleep between 11ish and 2ish. At 2.. his fever was up to just over 102. The motrin wasn't making a dent. We brought him out into the living room and called his pediatrician. i mentioned to shiela that if they said "give him a "tepid" bath" i was going to snap. they basically did.. but didn't used those terms, to it was ok. they had us give him his next tylenol dosage and get him into a warm, but not hot, bath. they clarified that she should not be shivering.. if he started shivering, then turn the temp up a bit and if that didn't shop the shivering, then get him out and dry him off.

So I hopped into the bath with him and we had a grand ol' time playing with his bath toys. he did ok, although it was clear that the temp of the water was cooler than the temp of his skin. the doctor told us to call back at 3:30 if his temp hadn't dropped at least a degree.. given the seizure history, they were going to have us go into the hospital at that point.

We put him to bed (he settled right down after the new dose of tylenol and bath) and set the alarm for 3:30am. His temp dropped almost 2 degrees. We were off the hook for the short term.

This morning.. shiela was a wonderful awesome parent and wife, because she got up and called the pedi when they opened and made an appointment for him and since i was still sleeping after being up much of the rest of the night being sick myself.. she took him in while i crashed. i felt guilty, but at the same time i was so exhausted that i didn't put up a fight.

As of this afternoon (Sunday).. Ben is asleep.. Shiela has a pizza on the way and i'm thinking i may try a bagel for dinner. Ben's temp has been down today, near normalish. We'll see how we do tonight...

Tomorrow.. shiela will be staying home with Ben as I drag my sorry butt to work. We need to check in with his pedi tomorrow to see if we should start trying to slow down on the motrin/tylenol. My guess is that it will depend on how he does tonight and if he runs a temp while on the meds again.

The pedi that he saw this morning took a guess that it might be Roseola , but acqnowledged that it was a guess. He had no symptoms of a bacterial infection.. which leaves us with a virus.. and since his only real symptom was the fever and he hasn't had that yet.. she took a guess. we won't know until after his fever truly breaks and the rash shows up. either way.. we're not out of the woods yet.

both shiela and i have been on high alert and have been barely sleeping for the duration of this given that we know how little it takes to trigger a seizure for him. We had a few close calls on Friday, but since then he hasn't looked like he was ramping up to a seizure.. but who knows since he didn't show warning signs on Thursday.

This video monitor is the best thing we've ever purchased. We can see him clearly night and day and can typically even see him breathing on it.. plus we can hear him. We're both pretty confident that the sound of his breathing when he has a seizure would wake both of us up with the monitor. It's the waiting and not knowing if it will happen again that makes you check the monitor regularly and jump at every squeak.

So that's the news from our end of the world. I'll update as he feels better, which will hopefully be very very soon.

1 Comment:

  1. June said...
    Sweet Benjamin...I just hate it when you are ill ..I know both you & Shiela worry constantly & you are being kept on edge any time his actions change. Just know Jaaym is keeping a constant prayer in her heart that he will outgrow these episodes & Mommy/Mamom can relax. My love to all of you - Jaaym

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