Operation Hope: No end to the crushing heartache

It’s been a really long time since I’ve updated you on Operation Hope. For those of you new to Lost and Tired and our story, Operation Hope is what I’ve dubbed our quest to find answers to Gavin’s fragile health.

Part of the reason I haven’t shared any updates lately is because it’s pretty depressing to live through and even more depressing to rehash. 

Having said that, it’s really hard for people to understand if I don’t write about our story.  

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There have been some changes recently to both his medications and his restrictions.  To be honest, both are concerning to me but it’s one of those things where we won’t know until we try. 

The reduction in medications is because the goal is always the most minimal use of medications to accomplish a goal. 

While we never made it to NYU to see the new specialist (because she didn’t want us to make the trip), she did consult with Dr. Moodley about Gavin’s case.  They decided to reduce Gavin’s Fludrocortisone, by half.  Essentially his means that Gavin’s body will be retaining less fluids.

This is concerning for me because it potentially makes him more vulnerable to an Autonomic Crisis. With that said, having him on a higher dose poses risks as well. 

As far as his restrictions are concerned, Lizze and I have decided to allow him back into martial arts at school.  For one thing, Gavin needs the discipline he learns there and at the same time, he needs the low impact physical activity. We will of course, keep a close eye on him to make sure that he can physically handle it.

I’m not afraid to admit that I’m terrified by all of this. 

Gavin’s health is continuing to decline, with little or no explanation.  There’s no end to the crushing heartache. 

Thankfully, he hasn’t had a crisis in almost two weeks.  However, we’re still seeing considerable memory and cognitive issues, that impact his everyday life.

At this point, we have no real direction left to go. 

We’ve been to the ends of the earth and back already, with no real answers to be found.  The only thing that we can honestly do at stage is get Gavin to a neuropsychologist and try to get a better understanding of the cognitive regression and memory issues.  I just need to begin the search for this new specialist. 

I guess that about sums it up in a few hundred words.  I’ll keep you posted and please keep the prayers coming. 

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉



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Becky Rogers Wiren

Raynette…and it’s so hard when it happens to our children! I have fibromyalgia but it’s nothing to me. But my son hurting…it sucks. Hope your son improves. Sounds like your son is a good person like my sons is!!

Raynette Jones

becky i feel for you my kid was 11 and got leukemia got over that then for 3 or 4 years they were calling me and my son crazy because he was faking (i was all over that like a crazy person) and ended up he has a rare autoimune diesease that only 300 in the US has. he is totally in pain all the time and has the best pain meds but he is debilitated. always sick, cant make plans because he doesnt know when he will be sick, he homeschooled himself (very smart with an academic scholorship waiting on him), cant go to school or even do online school because he is sick cant drive because he is on pain meds, wants a girlfriend and he could get one but he wont because he only has one week out of six that he doesnt totally feel like shit and doesnt want to “waste”it having to deal with a girls feelings. we know how girls are lol. it really is heart breaking. my kid cant even walk down the street, i have got to get more therapy as this is driving me insane. i still don’t know how he has stayed as sane as he has

Lost and Tired

Becky Rogers Wiren you have mine as well. Thank you

Becky Rogers Wiren

I feel for you…my son developed fibromyalgia at age 13, and it took doctors until he became 18 to diagnose, because he was too young, WTF? He became too debilitated to finish school so all my hopes are to get him up a couple notches to do so. I will pray for you all and hope your son feels better.

Lost and Tired

Thank you

Sherri Wishard-Mikeska

Hugs

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