Blessed

Last week, my husband and 10-year-old daughter were both sick with a head cold and cough.  This week, Zane and I got it.  Zane was a little warm yesterday, so we alternated ibuprofen and acetaminophen, which seemed to do the trick.  Normally, we don’t even treat a mild fever, because we’re believers in the way your body is designed to fight off a cold with a fever.  If you treat the fever, then you take away your body’s ability to fight.  But, with Zane, it’s different.  Fever can itself cause seizures in some people, called febrile seizures.  While febrile seizures are not related to epilepsy, I certainly don’t want to take the chance that one would re-trigger the I.S.  I’m not sure if that would or could happen.  Probably not, though I don’t think anyone can say that definitively.  But, I don’t want to chance it.  So, for him, we treat even mild fever.

Last night he got a dose of medicine before his bed time.  I intentionally stayed up until midnight to make sure he got another dose.  Getting woken up in the middle of the night and having medicine squirted into his mouth did not go over very well.  But, I felt better knowing he got a night-time dose.  Then I put myself to bed, after giving myself another dose.  This morning, when my husband got up to go to work at 5:30, I asked if he would check on Zane, which he did.  He brought him to my bed and laid him down.  Still groggy, I reached over to touch him and he was burning up.  Boy, if that doesn’t wake a mom up fast, I don’t know what will!  I immediately gave him another dose of medicine and started trying to cool him with a washcloth.  Again, that did not go over well.  You know how when you have a fever, you actually feel cold, like you can’t get enough blankets on.  Well, that’s how he was.  His little knees were shaking and his teeth were chattering, like he had just gotten out of a polar bear plunge.  Poor little guy.  His under-arm temperature was 102.3, which is equivalent to 103.3 oral.  That’s a scary range for any mom, but especially to a mom of a little one with epilepsy.  I kept trying to cool him off, but an hour later, the fever had barely gone down, so I alternated medicines and gave him another dose.  Thirty minutes later, it still hadn’t come down.  So, I got my daughter out of bed early, and jumped in the car.  I knew we were going to be right smack dab in the middle of rush hour, and we’re about 35 miles away, which could easily be an hour and a half at rush hour.  I decided to just start driving then, instead of waiting any longer and getting stuck in even more traffic.

Then, at a stop light, hanging my head low in shame, I texted our pediatrician.  We had an 11:00 appointment already scheduled.  But, when you have a feverish little one, that seems like forever.  When my daughter was little, I would have made due and waited until the appointment, and everything would have been fine.  Things probably would have been fine today too, but I was scared.

This is where the title of my post comes in.  “Blessed”.  Yes, we have been blessed in finding the most incredible people during Zane’s journey.  Seriously, INCREDIBLE people.

Dr. Kelly Olson (of Bootin and Savrick Pediatricks) is simply amazing.  Yes, I could have gone to urgent care or even the E.R., but then I would have had to explain Zane’s condition, and I guarantee I still would have gotten an eye roll or two.  Many doctors aren’t familiar with Infantile Spasms and just how scary it is, and we’ve found a lot of doctors are too arrogant to actually listen to a parent and their concerns.  But, once in a while you find doctors like Dr. Olson, who go above and beyond the call of duty.  Dr. Olson met us at the office before it even opened.  Seriously, before it opened.  The main lobby was closed, the lights were out, there were no office staff and just one nurse.  But, she got us in, got him checked out and gave him a prescription.  She even gave my daughter a quick look to make sure she was doing well since she had been sick last week.  What doctor does that?  Not many.  But ours did.  She is truly a special person and I am so incredibly thankful!

Thank you Dr. Olson!  You’re the best!

Besides being blessed with incredible doctors, I’m also feeling blessed that the high fever has not caused Zane any more trouble than any other toddler.  For over a year now, fever has been my biggest worry.  He held it off pretty well, but I knew it would eventually rear it’s ugly head.  Today was that day.  But, it’s down now and he has started on antibiotics.  Phew.  Now I can breath a sigh of relief!  Hopefully he’ll be feeling better by tomorrow, which is his 2nd birthday!  🙂

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Fever… and… guilt?

Baby Z started getting sick with a fever late last night.  It seemed to come on pretty fast, and none of us are sick, so I guess it’s just a little virus.  Nevertheless, fevers freak me out after IS, since his worst cluster of spasms ever occurred in conjunction with fever. 

Now, he is off all IS meds and is spasm free, though he remains on topiramate as a preventative medication.  But I have read too many stories about the seizures returning, sometimes with a vengeance.  Actually, as much as I want to help other moms and dads out there with newly diagnosed babies, I’ve had to step back from the forums and message boards.  I just can’t keep re-living it.  Yet I feel incredibly guilty for being lucky enough to have that option, if that makes any sence.  It’s weird, because I never felt guilty that my oldest was healthy.  But when you’ve been to your own personal hell and back, it changes you.  Then I feel guilty that I consider what we’ve been through my own personal hell, because I know others have been through worse.  All in all, we had it pretty easy for an IS case.  There are other moms on the message boards whose kids have never gotten the seizures under control, and they have run out of medical options.  They don’t get to see their child develop, at any pace.  They don’t get to enjoy smiles or mischievous grins or rolling or sitting.  They just endure endless doctor and hospital visits and meds.  Lots and lots of meds.

So, when I’ve been up on and off all night worried about a sick baby, and he wakes up and gives me a huge smile, even though it’s obvious he doesn’t feel well, and then puts his arms out to be picked up (a new development), I just can’t help but feel incredibly thankful.  Thankful, yet guilty that I have the opportunity to worry about something as trivial as a fever.