Tuesday, July 21, 2015

Let's go to Mayo

"It's like mayo that Grandma Marilynn always put on her turkey sandwiches."
Adam: "Except it has 'clinic' after it."

We have grown more frustrated with Sara's medical care. Our last appointment with her urologist left me in tears. His plan is to monitor her until her kidney stones fill her kidneys and disable them so much that she needs a kidney transplant. He is hopeful that wouldn't be until her teenage years. Even if he did surgery he doesn't know how he would do it or whether it would be successful. There is also fear that her kidney would not survive. But he would move forward with a surgery if I wanted him to. Doing nothing because you don't know what to do isn't a plan to me. And I have spent enough of my life paralyzed from action because I was fearful that I am passionate about not making decisions that way.

Her nephrologist still remains perplexed as to why her body is making the kidney stones and really has no further suggestions for tests. Any time I say it must be something unique, he disagrees because she doesn't have any indicators for something genetically abnormal, etc. But he has tested for all the "normal" things and those tests came back...normal. Therefore, doesn't it seem likely that something out of the ordinary is going on? Anyone else want to agree with me on that one?

Mid June I finally took charge and called Mayo Clinic myself and requested an appointment. I was shocked to hear her say they had an opening in a week. I didn't feel like we could get ourselves organized and medical records forwarded from 2 hospitals and 2 physicians in that amount of time. So here we are.

We are treating it like a family vacation at the same time. The kids were very helpful with packing and getting the new luggage rack attached to "big red".

Boy there is a lot of stuff to take for a family of 5 planning to be gone for at least 6 days! I say at least because we have to be completely flexible with our schedule. All we know is that we have an appointment with Dr. Sas tomorrow at 2:30pm. By the way, his name makes the kids giggle! From there, we have no idea what tests he will order or how long they will want us to stay in the area. We have a list of places we would like to see and things we would like to do and we will get to them when the schedule allows.

We left at 10am this morning.
 

Sara, apparently, was feeling very pink today as she sauntered down the steps announcing herself with a "Well, HELL-o!" Pink shirt, pink skirt, pink poofy vest, pink shades, pink pillow, and pink thermos.


We made one stop to calm Evan and go potty and then met Grandma Sue and Grandpa George for a lunch break. I think Evan wants a fish tank.

A few more hours down the road Evan woke after a cat nap so we enjoyed a little picnic snack time. I love little spontaneous moments like these.
Back in the car and we finally made it to Rochester, Minnesota for dinner around 7pm. Nine hours after we had left home we completed the 6 1/2 hour drive! Thankfully, the kids were really fantastic in the car.

We got to the hotel and had a chance to peek at the pool while Shannon was making numerous trips with all our...stuff. I am super excited about this hotel. We have a fantastic suite with a fun pool and all for a Mayo Clinic reduced rate of $99 per night!



Once in the room, the kids had to inspect everything and were trying to take over our bed, of course. It is the first hotel I have ever stayed in that has a full kitchen and a bedroom door that closes. After looking around, Adam declared "This was a really nice choice! It will make a great home for a week!"


At 9:15 we finally had enough unpacked to tuck the big kids into the their bed of the shared sleeper sofa and I nursed Evan dessert for the night.


At 9:30 Sara came in our bedroom to inform us that Adam had rolled so close to her he had touched her leg.

At 9:45 Sara came in our bedroom to inform us that she was hot.

At 10:00 Sara came in our bedroom to inform us that she thought Evan had pooped.


I think she finally crashed after that.

All the fun aside, I am feeling a wide range of emotions. I am hopeful that we will be connected with a doctor who will pursue all avenues relentlessly until he finds an answer for my mystery girl. I am fearful that we may walk away with another "I don't know." I am weary for the years that I have been carrying this burden and being an advocate for Sara when it seemed no one else was. And then on top of that the strain of having a new baby, as well as mom's death--it is all overwhelming sometimes. I am excited that we have some dedicated family time away. While these medical trips aren't much fun, they allow us to let go of the rest of the world around us and solely exist as a family for a purpose. It is in those moments that we are most beautiful and I wish we could hold onto them when we re-enter real life.

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