Autonomic Crisis: Not sure what to do

The other shoe is beginning to drop and we can see it coming.  It’s like one of those dreams where you’re trying to run away but you’re stuck in place and can’t get away.

I just got off the phone with Gavin’s immunologist are Akron Children’s Hospital. 

She called because Gavin’s labs are a bit off.  His white cell count is okay,  which is good.  However,  his hemoglobin levels are low.  She said that they aren’t to bad but it was enough to warrant a call.

She wanted to know how he’s been doing.  I explained that his heart rate has been pretty high for the last few days. Right now his resting heart rate is about 130 bpm.  This has her concerned and she said is early signs of adrenal crisis.  His heart rate is high because his body is compensating.

The reality is that he needs to be seen in the ER. 

The problem is that he also needs to be in Cleveland in the morning for that procedure and will see his autonomic specialist as well. 

If we go to Akron, we kiss those very important appointments goodbye.  Should we bypass Akron Children’s Hospital this time and go straight to the Cleveland Clinic ER. We would have to make the same trip in the morning anyway?

As a paramedic,  that screams bad idea.  As a parent wanting to find answers for his son,  it seems like an option.  It’s just not practical and the logistics are not going to be easy. 

Either way,  it’s safe to say that the entire day and possibly the rest of the week has gone straight down the crapper.

I have no idea what the right thing to do is.  He doesn’t seem to be experiencing distress but than kids will compensate well for awhile and then they crash hard.  I remember that from my career as a paramedic as well.

Please say a prayer…

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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lostandtired

Thank you everyone. Cleveland told us to divert to Akron as that was the safest course of action. We are here at Akron Children's Hospital and waiting to find out what we are supposed to do. Thanks again..

Lisa Kay

You guys, as always, are in my thoughts and prayers. Sending more good vices to Gavin, and to the rest of you as well.

ChrisCrane

I agree,on to Cleveland ,if all the appointments can possibly be met they must be ,they  are hard to get into and  the answers will be needed  for the the path forward with possible intake matter of fact try to get copies of everything so you can supply plenty to the board  Good luck,and hoping for answers for you all, Gloria

kat13

I would also suggest go straight to Cleveland Clinic ER. I live with low levels of hemoglobin and that is something runs in my family, so that by itself isn't a huge deal other than if the surgery coming, then it would be highly critical. 
 
But the heart rate is something you shouldn't be ignoring, and you know it. Sometimes, you just got to go with the flow and do what is more critical for your son right at that moment. Also I wonder if with given the situation his anxiety is high and is some contributor factor to his high heart rate…. Just a thought.  

KathyKohlBuehler

I would go straight to Cleveland if you believe he will be admitted, and then they may be able to still do tomorrow's procedure.  If he is not stable enough for that trip, tomorrow probably won't work anyway.  If Cleveland is where you are trying to coordinate his care from. then go there to minimize trying to work with 2 separate care plans.  Onward! And, good luck with whatever seems to work out for all of you.

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