Scary Moments

When your child has a chronic illness scary moments are a bit of a given.  You just never know when something ‘weird’ is going to happen.  Add to that fact that your child has a chronic illness that most doctors don’t know the full impact for and you get fun scary moments.

We had one of those on Friday, Nic and I were packing for our trip to Mexico and she had commented she wasn’t feeling great, but we push her.  She was bringing me shirts when she looked at me and said I am very dizzy and my vision is starting to go black.  I made her lay down right where she was and went to check her BP and HR. I was able to get a pulse in her wrist (which isn’t too surprising, her wrist pulse is hard to get).  I was gone maybe 30 – 45 seconds and when I came up she was white.  Her HR was 50 and her BP was 80/44.  When I took both again they were just as low.

I made her brother get us something to drink and pushed 24oz of fluid into her. I then asked her a bunch of questions while we put her feet up.  The goal being we needed to get her blood back to her heart and brain. This was a classic failure of her autonomic nervous system.  Her body wasn’t able to manage either of those at that moment.

The hard part was she kept telling me that she took her morning meds and how could this be happening.  How do you explain to an active, happy-go-lucky 12 (almost 13yo) that her body is conspiring against her.  That her body doesn’t get the communication part.

Think of this way, you and your significant other are driving on vacation and he’s navigating.  He tells you to turn green and go grass.  You have no idea what he’s talking about so you start to panic.  Add to that you feel like you are in a terrible part of town and things get worse.  This is what our kiddos deal with every day. Some worse than others.  For us, this is not an everyday occurrence but for some it is.

I am thankful it’s over, but I worry as we are taking her out of the country tomorrow that things could be getting worse… what ifs run through my brain.  This is a constant fear…

I pray someday that this child doesn’t have to deal with this crazy disease and that we find the right combination of meds that allow her to feel good. Until then we’ll be on this crazy ride.


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