Hello from beautiful Minnesota! I wish we were here sightseeing and heading out into the wilds because it all looks so wonderful!
We had our first appointment today, we saw the doctor that will be overseeing her case. She is really nice, and we did a very thorough and comprehensive medical history and physical exam.
We did agree to cancel some of the tests that were repeats or deemed unnecessary after our consult, so our estimate has dropped - thank goodness! Now we will just have to wait and see what else gets scheduled based on bloodwork and the remaining tests.
During the physical exam she noticed goiter and has suggested Hasimoto's - she is curious why, based on Leah's history of elevated thyroid related tests results and the goiter why Endo would have said no endocrine involvement - also questions the specter of possible future autoimmune issue as suggested by the Endo back home.
Also suggests a possible Migraine variant as reason for the "episodes"- we have kept the Neuro consult, he is a sleep specialist as well and might have some greater insight into the overwhelming tiredness.
We are now #6 on the waiting list for Ronald McDonald house, possible to move tonight, more likely tomorrow, next day at the latest. We are paying the reduced compassionate rate of $60/night at our current hotel and have a fridge but not a microwave. There is a small convenience store nearby but no grocery store. They run a shuttle to Walmart on Wednesdays, so we will head over tomorrow to pick up some groceries and fresh fruit to keep in the room with us.
We met with the Concierge Service they offer for International patients and we now have a list of low cost things to do in the area to keep her busy, I think we are heading over to the playground/pool tomorrow afternoon after WalMart. There is a pool at this hotel so we will be up there tonight and then have an early bedtime. Tomorrow's first appointment is 730am.
Meals are a little difficult as it is a rather artsy downtown area without fast food joints :) There are pubs, wine bars and steak houses ($$$$$) but having trouble finding small restaurants or diners. We found a nice little dutch place (Pannekoken! - baked and stuffed pancake!) but can only eat there so often!
The hospital is amazing! There is no such thing as business casual - even the volunteers wear ties. Clerks at the medical desks wear black pants and crisp light blue button down uniform shirts. Everything is handled in an orderly, efficient and patient centered manner. Every single person we have come in contact with have been helpful, kind and polite. We have heard a few people with the classic stereotypical Minnesota accent but not too many. :)
On the whole, other than the very long and involved process of getting through the admission and payment process this morning, things are going very well! Leah is in good spirits and feeling good, she enjoyed the flight and tolerated it well.
Well I have obviously spent to long on the computer, I am being pestered to head up to the pool!
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