Tuesday, January 19, 2016

Cardiac issues are for life and they affect everything

Whenever C's heart defect comes up, someone inevitably says "but he's OK now, right?"  The answer, as always, is yes and no.  I generally say "Yes, he's repaired, no his heart isn't perfect.  Some day we'll probably face further issues."  However, in practice, as we get distance from his repair, we do let down our guard.  We forget he's always sick.  We stop being hyper vigilant and we move on with our lives.  A week or so ago, that came back to bite us.  We got complacent, we treated C's GI illness like any kid's.  As I said to my pediatrician, we forgot how close the edge C rides.

C got a GI bug on a Saturday evening, he threw up several times immediately, and a couple more overnight.  We were able to get him to drink water, but as always, water is the only thing he will drink.  On Sunday, C had a couple of crackers but said he wasn't hungry.  He said he wanted a hamburger for dinner, but barely nibbled on the bun, we couldn't get him to eat anything, he only drank 3 or so glasses of water.  He went to bed early that night, still refusing to eat.  He threw up again at around 2 in the morning.   He slept in and refused breakfast Monday morning.  I called the pediatrician, we decided to bring him in for one of the first afternoon appointments.  I had TheMan come home from work to watch R so she wouldn't be exposed to the germs at the pediatrician's office.

C wasn't up for walking and certainly didn't want to go to the doctor, so I ended up carrying him to the car.  For better or worse, he still fits in my toddler sized MT, so I was able to strap him on when we got to the doctor's office and carry him in that way.  In the bright sun, he looked so very sick and dehydrated, I was scared.  When we tried to stand him up to weigh him, he couldn't stop leaning on the walls, our nurse said she thought we'd be headed to Mercy.  Once she took C's blood pressure and immediately called for our doctor, I knew we were heading for the hospital.  The doctor looked very concerned and asked if I could get him to Mercy or if we wanted to call for an ambulance. I chose to drive him there because I could have him half way there by the time an ambulance arrived, they are very close.  When we arrived at the hospital, we were immediately triaged and moved back to a room. C's blood pressure was way off and he looked miserable.  C was not happy about being at the hospital, he was certainly not happy to get an IV, but they got a line in, got initial labs and got him hooked up to a bag of fluids.  When his lab results came back, he was severely dehydrated and his blood sugar level was 34.  Let me say that again, because it makes me ill every time.. 34.  34 is seizure, coma and death levels for blood sugar.  34 is below the range of Severe  Hypoglycemia (40-35).  Blood sugar that low can cause permanent brain injury and heart damage, especially in those who already have heart issues. Beta blockers, which C is on, can help mask the symptoms of Hypoglycemia. I didn't know beta blockers could have such an effect.

C has no reserves, NONE.  We can't get any decent level of body fat on him, we try, he just isn't into it.  We have to remember he is not typical, he doesn't have reserves and we must be hyper-vigilant and proactive when it comes to his health.  Compounding that issue is his sick sinus syndrome.  His heart beats slower anyway, it fails to compensate and his system will crash faster and with less warning.  This has been a wake up call for all of us.  My pediatrician even said we forget because he's done so well, but he's still, and always will be, closer to the edge than a typical child.

After a dose of zofran to get his tummy back under control and an overnight stay to prove he would eat and maintain his blood sugars, we brought Charlie home.  I can't shake how lucky we were. Two open heart surgeries and a GI bug almost got him.

This was a terrifying wake up call.

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