Tuesday 22 August 2017

The big scary E

As a mom there is nothing more terrifying then your child being sick or hurt, especially when there is nothing you can do for them. As a nurse it is painful to see a patient suffer and no there is truly nothing you can do for them in that moment. These two things added together make for the most nightmarish moments of my life...

My sweet boy has been having seizure type episodes for over a year and while we are seeking treatment for him the process is long and trying. We have not even reached the point of a diagnosis never mind a solution.

We have seen many doctors and I have heard all kinds of medical terminology and theories thrown out about what might be going on. Many of these doctor's visits I am alone with the kids because for some ridiculous reason specialists seem to only work bankers hours, this makes it really hard for Shane to come as he can not take so much time off from work (it is a fairly new company). Luckily for us I do work shift work and I have given up my permanent position meaning my schedule is fairly flexible and when an appointment opens up I have the ability to change my work hours. This in itself is stressful and can sometimes be enough to push me over the edge.

At the first paediatrician appointment I had both kids and had worked a night shift the day before so I was not at my best. I tried so hard to be prepared and make sure I could keep both kids well occupied as doctors constantly seem to be running behind. I packed snacks, juice, toys, ipad, diapers, pullups, wipes, and even an emergency candy stash. We took the road trip into the city (yes it is only 30 minutes but with small kids, post night shift, trust me, it feels so very much longer.) We successfully navigated to the office and even managed to find a great parking spot (I parallel parked without incident!!!) We were even on time for our appointment (this never happens!) That is when the chaos cloud descended on us....

We walked into the office and were greeted by a gigantic boot rack where our shoes were to be placed, this would have been great if we were wearing socks... I didn't want to make a fuss so we took off our shoes and I thought we could just make sure to wash our feet straight after with the unending supply of baby wipes I had stashed in the car. The next obstacle was the dreaded sign "No food or drink please." FML!!! While I do understand that some kids have allergies and that this is fairly logical I had not even thought this would be in the realm of possibility. A place where there are small children but no snacks?! I think this is called hell. I checked in at the reception desk and managed to find a corner for the kids to sit and play with their toys but of course they wanted the germy office toys instead. After settling in and even managing to sit in a chair without my children climbing on me or making demands the nurse found us and asked to weigh and measure Isaac. This was only slightly painful and demeaning since he would not stand on the scale himself so I was also weighed (once with him and once without).

Finally we were herded into the tiny closet like space called an exam room and greeted by a paediatrician and a med student. They both poked and prodded at Isaac for his exam but he tolerated it pretty well. Finally he was allowed down to play with his sister and the doctor turned her attention to me. It was nearly impossible to concentrate on what she said to me as I was trying to stop the tiny humans from killing each other since they both wanted the same toy. The only thing I remember is all the scary words that popped out at me... MRI, genetic testing, neuro consult, EEG, ECG, blood work, brain imaging, grande mal, petite mal, absent seizure, focal seizure, and finally the scariest word that I never imagined hearing in relation to my kids.... EPILEPSY.

Now keep in mind this isn't yet a formal diagnosis only a theory of what might be going on. We have an MRI this week and our EEG next week. Hopefully the answers start to come soon.

#Epilepsy #paediatrics #medicalmama #nurselife #momlife #scarymoments #ijustwantsomeanswers

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