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Scary Stuff – Gavin had an Autonomic Crisis during his #IVIG infusion today

Today really sucked. Gavin crashed during his #IVIG infusion and I was really scared.

12/06/2013 Autonomic Crisis Update 2: IVIG Infusion is a go

I have to admit that I’m so stressed out that my chest hurts when I breath. It’s all anxiety but it still makes it harder to present to Gavin as though everything is okay and I’m not worried.

12/06/2013 #Autonomic Crisis Update 1: Emergency Room @AkronChildrens Hospital

I’ll be honest, I’m really freaked out. Gavin is scaring me to the point I feel sick to my stomach. He’s lost 25+ lbs since June and his diet hasn’t been reduced. In fact, it’s been increased and he’s still losing weight. He weights 110 lbs now and that really scares me.

Update to Gavin’s Autonomic Crisis: 11/18/2013

I wanted to update everyone as to Gavin’s condition, following today’s Autonomic Crisis.

Autonomic Crisis: Hanging in there

We survived the night.  Gavin is actually still sleeping and slept straight through the night.  There were several doctors that came in throughout the night to ask questions and examine Gavin. He’s been doing a lot of coughing, his color is still off and he’s sweating.  The blood pressure machine has been having a really …

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Autonomic Crisis: Last Update for 8/29/2013

First of all, I want to thank all of you for your thoughts and prayers today.  This has been a really, really long day. Gavin has had the last of his meds for the night and is finally asleep. He’s doing about the same, which is okay but still concerning.  We’ll have to see how …

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Autonomic Crisis: Admitted (8/29/2013)

Gavin is in his room now and officially admitted.  There’s too many weird things going on to be comfortable sending him home, without watching him overnight at the very least. Lizze and I decided that she would go home and I would stay this time.  Staying would take way too much out of her and …

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Autonomic Crisis: Change of Plans (08/29/2013)

As we were preparing to be discharged, another doctor came into the room and wanted to talk with us about what was going on.  Because they never see anyone like Gavin, they are relying on how we feel about the situation.  To be completely honest, I’m uncomfortable with Gavin being discharged because this doesn’t feel …

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