Wednesday, July 22, 2015

Our first Mayo Clinic appointment

The day finally arrived that we have been talking about for so long. Arriving at the building and walking thru the halls felt a little like meeting a celebrity! I suppose that sounds odd when talking about a building but it was the whole experience in general that was so amazing.




The building itself is beautiful and towers above all other buildings in the city. It's like it stands as a beacon for all who come, hoping for help.



The building stands 19 stories tall and our appointment with Dr. Sas was on the 19th floor! It had quite the view!



After checking in at the desk, I discovered I had to complete 10 pages of information. It sure would have been nice to receive those papers ahead of time. Thankfully Adam and Sara found a place to hang out until we saw the doctor.


About 45 minutes after our scheduled appointment time we were taken to a room. It had a mini exam table, typical desk and chair area, as well as a corner changing area and a full size couch! We needed the extra space with 2 adults, 2 children, a baby, and a stroller jam packed with stuff! I think Dr. Sas was surprised when he first walked in the room.

He carried a large stack of papers and commented how he can't believe medical records are still forwarded via fax. When will that process go electronic?! He had been studying Sara's history and I even saw some things highlighted on the pages! Before he jumped in, he said "Tell me what brings you here today." Shannon and I took turns recapping the past few years as briefly as we could and finally explaining that we were here because our local doctors had run out of options and were just going to wait for transplant status.

Then Dr. Sas started recapping what he gleaned from Sara's history to make sure he understood all the facts. Shannon had just told me if the doctor needs us to recap a lot of that then he didn't do his homework reading thru things. Dr. Sas said, "Now Sara was born premature at 28 weeks, right? And she was in the NICU for...44 days?" I think he did his homework!

We talked for a long time and he explained his thoughts as to why Sara's case presents so unique. She has a few things that he would say 'typically when this happens, that means this but in Sara's case it is the opposite so that is perplexing.' The make up of her stones is quite rare. When surgery was performed, they appeared to be very soft and broke up easily. However, when she finally passed some and lab tests were able to be performed, the results showed them to be very hard. It is quite rare for kidney stones to be made up of what Sara's results are. He also noticed something about her 24 hour urine tests. Typically as children get older a certain level decreases but in her cases it is increasing and is actually 3 times the amount from the original test.

We talked about Dr. Nguyen's idea about a problem with her Calcium Channel. Dr. Sas has worked with a doctor in Switzerland who is an expert in that field so what a great resource!

We were frustrated to discover that OSF did not send the results of the genetic test we did and they did not send a CD of her x-ray and ultrasound images. I'm not sure why. Thankfully, Shannon had the most recent images from January 2015 and I found the genetic results so we were able to give Dr. Sas a jump drive with that information.

He left the room for a bit to check in with a urologist that he wanted us to see while we were here. Dr. Granberg is a specialist in pediatric kidney stones. Dr. Sas returned and said the good news is Dr. Granberg is very interested in meeting with us. The bad news is she is going out of town for a few days. She can see us in her clinic on Tuesday next week. One real advantage of Mayo is the ability to collaborate, as well as how much they allow the doctors extra time to really delve into unique cases.

He is going to take time tonight to think about her medical history and Sara's complexities. So far she provided a urine sample. Tomorrow we will start another collection for a 24 hour urine test. And we have to report to the clinic at 9:30am for a fasting blood test. Friday we have an ultrasound scheduled but they are hoping to move it to tomorrow.

Appointments are not set in stone but we are loosely thinking that we will go ahead and stay longer to see Dr. Granberg next Tuesday. That would be easier than making another trip lately, which we may still have to do. The challenge with that is that Shannon has to be back in Peoria to teach a class on Monday-Friday. We knew this would be possible and figured he could get home somehow and I would just stay here by myself with the kids. Now that we have been here for a day, the logistics would be very very difficult for me to manage on my own. We are working thru possible plans for Shannon to teach remotely for a few days thru a video session and then when appointments are done, we will leave for home someday at 6pm to get back for him to finish teaching live.

We left Dr. Sas at about 4:40. Evan had some floor time on a blanket while we waited for Shannon to get the files transferred to the jump drive. We hurried quickly to the 16th floor to get urine specimen supplies before they closed at 5:30. Another very neat part of the building. This photo doesn't do it justice.



Then we walked and walked and walked looking for somewhere to eat that was still open in the building. On the way we ran into someone playing a piano in the lobby.



We finally got back to the hotel at 7:30 and tucked everyone into bed. Poor Evan had only had 3 cat naps for 10 minutes today so he was exhausted. Thankfully, he wasn't fussy or crying, though. Adam and Sara were worn out, as well, but extremely well behaved.

I can't even begin to describe how excited and hopeful I am right now. I feel like God is with us lining up even small details like our schedule, the behavior of the kids, our planning for the day so we have enough supplies and snacks and things to do. Everyone has been so nice and helpful. It is wonderful that I don't have to bang down a door to be able to talk to someone!

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