June 7, 2010 06/07/2010
 
 Abby and I got home from Cleveland on Saturday night about 7:30.  We really have the worst luck with travel!  Since the flight was cancelled Tuesday due to weather, we didn't arrive in Cleveland until Wednesday, so scopes were moved to Friday.  We were scheduled to fly out at 7 on Friday night which shouldn't have been a problem, but the operating room was running 3 hours behind, so Abby didn't even go back til 2:30.  Needless to say, we didn't make our flight, and United decided that we could take a later flight but would charge us $300 + in fees to change....even though they were the reason we didn't make it to our destination when we were supposed to!  Ended up renting a one way car and driving to Akron and flying out on Saturday on Air Tran, which was cheaper than the change fee on United, and a straight through flight too.

These docs are great and very sensitive to the fact that we fly to see them.  As a result, they pack as much in as possible which leads to information overload on my part.  But it was a good trip,and this is the quick synopsis:

Autonomic clinic was good on Thursday.  Made several med changes and changed/put in place protocol to increase when under stress or symptomatic.  Endoscopy and colonoscopy were good but stomCh very red and irritated.  Dr Mrs. C sent biopsies out.  Will have results by end oft this week.  Changed how and when we use C tube to see if we can have better control and stop tube from leaking from pressure of stool.  If biopsies are ok, then back in 4 months.. If not, then we will come back before school starts to handle stomach issues.  He also ordered PT or a trainer at gym. She had had significant muscle loss in legs.. Ordered coq10 levels as he is sure they are low as well.  They were drawn in OR w other labs.  We need to follow up with Dr. Vidya on the endocrine issues.  Lots of diet changes to smaller more frequent meals that I need to work on.  Both Dr. C's spoke at length with Abby about listening to her body and adjusting medications as needed when she is under stress or when she feels lightheade and weak from blood pressure changes and begins havng "episodes." 

There was a lot of information packed into a short window of time, with a good deal for us to think about, but it was a great visit, and much was accomplished.  Abby likes them both very, very much and trusts them.  Its a good relationship and even with the travel woes, she still says that she does not want to go anywhere else.

Thanks for the emails, phone calls, thoughts and prayers.  We appreciate them so much.  More later.

Love, Lauren
 


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