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Autonomic Crisis: Heading to @AkronChildrens Hospital

I spoke with Dr.  Moodley’s office at the Cleveland Clinic.  We were originally going to be taking him to the ER at Cleveland. However, as we are getting ready to go, I received a call back instructing me to take him to Akron Children’s Hospital instead. I don‘t know for sure why they wanted this. …

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Autonomic Crisis: Gavin seems to be crashing

We just got home from Gavin‘s martial arts promotion.  Gavin did really well and I will have pictures up when I can.  Right now, we have a problem.  It looks like Gavin is in another autonomic crisis.  After promotion we got spend some time with him in his classroom.  He didn’t look good to me …

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Autonomic Crisis: 11/13/2012 Further Complications

Lizze and Gavin are on their way home. For whatever reason, his infusion finished much faster than anticipated. His HR has not dropped below the mid 130’s since at least 8am this morning when we first became aware.  He did top out today at almost 160 bpm. I have been in contact with nurses with …

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Autonomic Crisis: 11/13/2012 Please pray

Lizze just called me from Akron Children’s Hospital and told me that Gavin’s heart rate is so high that it keeps setting off the alarms.  Right now, his resting heart rate is in the 140-150 bpm range.  While they were sitting in the lobby waiting, his HR was in the high 130’s.  He’s not nervous …

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Autonomic Crisis Update: 09/01/2012

I wanted to take a minute and update you all on how Gavin is doing,  health wise. Since tightly controlling his fluid intake and starting his new meds,  Gavin seems to be a bit more stable. I’m very,  very cautiously optimistic because these things have a tendency to sorta pop up unexpectedly.  There’s no way …

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Autonomic Crisis: Bridging the gap

There was just a shift change here at Akron Children’s Hospital.  However,  someone must be looking out for us because the doctor that just came on did his residency at the Cleveland Clinic under Gavin’s autonomic specialist.  This means that he is very familiar with Dr.  Moodley and has a very easy time contacting him.  …

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Autonomic Crisis: Orthostatic Issues

We are at Akron Children’s Hospital and they got Gavin back right away.  During the trip Gavin’s heart rate went down. When checked during intake it was 102 bpm. When we got to his room and they hooked him up to the monitor,  his heart rate stayed lower.  The doctor came in and wanted to …

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Autonomic Crisis: Akron bound

We heard back from the wonderful Doctors at the Cleveland Clinic.  They do not want him to make the trip to Cleveland unless Akron Children’s Hospital transfers him directly.  They want him to be seen immediately at Akron Children’s Hospital.  Emmett is going to Lizze’s parents in a few minutes and then we will leave. …

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