Really Bad News – The Cleveland Clinic has done everything they can


I’ve just heard back from the Cleveland Clinic, in regards to Gavin’s worsening Autonomic stability.  We’ve officially run out of options there.  Our specialist has done everything he can possibly do and we are to proceed to the Mayo Clinic.

The Mayo Clinic is located in Florida, Minnesota and Arizona. 
We can’t fly because Gavin would never survive that. Our only option is to drive but that wouldn’t be good for him  either.  This is an unbelievably frustrating catch 22.

I’ve put in an appointment request and should hear something back by Monday or Tuesday. 

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When I put the request in for an appointment, I did so for the Minnesota location because that’s the closest.  While it’s closest, it’s still several states over. I don’t know how we’re gonna pull this one off. 

I’m so close to just breaking down right now because I’m so completely overwhelmed and I don’t know what to do…. This would be the farthest we’ve ever gone to persue Gavin’s health problems and there’s no guarantee that they will be able to help. 

There’s also insurance, money and the simple logistics of a trip like this that may never fall into the same rhelm as practicality. We don’t even own a car anymore……

I feel sick to my stomach right now……..

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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Peggy Sampson

I’m sure you can get help with transportation and lodging. The problem here would be who would care for your other sons and Lizzie?

Colton's Journey

Only he is covered not the rest of the family

Lost and Tired

Nikki Haddix that’s a brilliant idea….. I’ve never thought if that……

Nikki Haddix

What about a cabin compartment on a train? There is ways to cover. If Gavin is on Medicaid they help with transportation costs. If you need more suggestions, just give me a holler.

Colton's Journey

I prefer the university of Minnesota over Mayo Clinic

Shirley Stavedahl

MAyo Clinic in Minnesota is an awesome place and is easy to navagate….contact them and discuss your issues with getting there and places to stay once there…

Heather Lee-Thomas

my prayers are with yall.

Avia Batya

::hugs::

AutismAdventure

I am wondering about angel flights as well.  I’m not really familiar with them but, I have heard about special medical flights – sometimes non profit.  I would think they could likely land more quickly with a smaller plane if necessary.  I am wondering also about a free place to stay.  Maybe a church would offer a family that could put you up.  I know it will be complicated but, I also know that it could be so worth it.

rjones22

my son has a hard time flying as well. it is not because of a autonomic disorder it is because of his Behcets. his spine swells up and of course it is painful andit takes about two weeks to recover. we are blessed that we have suposedly “the best” hosptials here by us. but truly i havent found a “good one” yet. I think that is because no one can fix my child. the doctors are also overwhelmed cause they don’t understand what is wrong with him (he has Behcets) and even if they did there is nothing to do to fix it. i am so tired. it is so frustrating. i know you are tired too and frustration has to be over the top. no solutions from me unfortunatley. i was thinking that if akrons (which i dont know anything about) seem to be on top of this as they dont know what to do. does the mayo clinic have anything they can do for it? I would go to the ends of the earth to find something for my kid but seriously we have been to john hopkins and they didnt have anything for us except to say he is cancer free (which we know and are thankful) so that was a 12 hour each way drive (so he didnt have to fly) but we didnt get any answers cause they didnt have one

upliftingfam

I feel for you and your situation. Have you considered looking into Duke University in Raleigh, NC. I know it is still a long ways away from home but it is closer than some of your options. 

I will keep your situation in my thoughts and prayers and that something will work out.

KathyBrower

Angel flights?

Lost and Tired

megskitchen  I don’t know how he would do on a flight.  The pressure is a concern as is the fact that if something does happen, they can’t just land the flight….  Driving is dangerous but if he destabilized, we can pull over and wait it out…

megskitchen

Rob, can you explain why Gavin cannot fly?  Is it that it would put him into crisis because of the pressure, or the people or what?

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