Operation Hope: Hurry up and wait



On Friday, I was scheduled to check in with Gavin’s autonomic specialists office and touch base on how the alpha-blockers were working.

The truth is that they don’t appear to be doing much of anything, one way or the other. 

Gavin has been complaining about chest pain again and it’s been awhile since we’ve seen that.  However, his resting heart rate is still in the 130’s. 

I explained that because his metabolism is so elevated, it’s now affecting his already compromised immune system.  Basically, things are getting even more complicated now. 



Unfortunately, Dr. Moodley is out of the office until the 20th.

The nurse said that basically, because Gavin is so complex, no one would want to touch this and make medication changes, unless it was an emergency, until Dr. Moodley returns. 

I have to agree…..



Right now, Gavin’s basically status quo and so it’s not necessarily urgent that we make any changes right now that could make things worse. With him, there’s just no way to know how his body is going to react to anything that we may do.

For right now, we just need to hurry up and wait. 

For the record, waiting is something that I’m not very good at, especially when it comes to my family.  🙁

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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Lynda Stacy-Visyak
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Hurry up and wait. Yep, I get that statement! I think puberty has made a difference in all this too. Hopefully time will do positive results in the long run. Hope! 🙂

rmagliozzi
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rmagliozzi

ugh. so frustrating! You need a doctor House to get on the case with this ASAP. Hoping for miracles for you. Would it hurt to rerun a test for lyme disease? He has every single symptom I have ever heard of regarding lyme, and some people I know didn’t show positive until tested seven times for it. Lyme hides out in the lymph nodes and typical lab testing is very unreliable, unfortunatly.