Day 2 at Mayo Clinic

Sara started the morning with no food and collecting all her urine in a large orange container--such interesting normalcies for a 6 year old. I think this is her fourth 24 hour urine test so we are very familiar with the routine, except we have done it at home on a weekend in the past and not on vacation where we have to carry a collection system and container of urine around with us all day! She started the day by disposing of her urine because that was essentially made in the 24 hours prior, and then she has to pee into a "hat" container every time after that until her first morning urine tomorrow morning. If we miss anything or it gets contaminated, we have to start all over.

We loaded up a whole lotta stuff (each of the kids had a back pack and thermos, my thermos, stroller, diaper bag, bag of toys, picnic blanket, laptop bag, and wheeled suitcase with Sara's urine collection items) and headed for her 9:30am appointment for a blood draw. When we left Mayo Clinic last night at 7pm after dinner, the building was completely empty and the elevators to the parking deck were almost locked! This morning it was such a hustle and bustle of people it felt like a small city inside a building. A rush of people were everywhere yet at the same time a large group was paused in front of the piano again, enjoying a moment of peace for your soul. A volunteer was around every corner to offer help and on more than one occasion they remembered us!

Back on the 16th floor, I was able to take more photos of the last waiting area we were in last night. I am still in awe as I walk thru some sections of the building. I am 41 years old and I feel like a little kid!

The TV screen was actually a touch screen that you could select from a variety of informational shows about animals--turtles, monkeys, etc. Way better than just vegging out to cartoons.

Sara's blood draw went smooth and they wrapped gauze around it rather than putting a band aid on that pulls all your arm hair off when you remove it later. I wish our hospital at home would do change to that!

Afterwards Sara got to pick where to go for breakfast since she hadn't eaten yet and we all were happy she chose Dunkin Donuts! We sat outside. They had a few blocks of the street blocked off for vendors to sell items and music was going to be playing throughout the day.

We did learn upon arriving for the day that we have a follow up scheduled with Dr. Granberg, the urologist, on Tuesday at 8:45am. And then we see Dr. Sas again that afternoon at 3pm.

We talked with Dr. Sas and his assistant quite a bit throughout the day today, as well as exchanged emails. We learned that the CD of images (x-rays, ultrasounds, CT scan, etc.) was never sent from our local hospital because the radiology department did not get the request. I completed the form exactly as I was told but the records department did not forward it to radiology. We were ready to request them to overnight a CD but instead the woman asked if we just wanted them sent over electronically thru something similar to an inner hospital network process. Perfect! Thanks, God! Now Dr. Sas has every piece of Sara's medical history that has ever been done.

We have another visit to Mayo tomorrow for a 12:45 renal ultrasound--jelly on the belly as we call it.

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!

First morning of family vacation fun

The big kids and I headed to breakfast while Shannon stayed with Evan to let him sleep a little longer. It was so nice to have so many breakfast options, hot and cold, instead of just the typical cereal and donuts that comes with a hotel free breakfast.

I wanted to be laid back and flexible, but we also had Sara's first doctor appointment to get to and the cave was an hour away so we ended up quickly trying to get everyone out the door and on the road. Apparently in the rush, Adam decided he was hot.

10 minutes down the road they were already asking how much longer to the cave. Ugh, this is going to be a long few days when they have no concept of time anyway! And Sara especially did not appreciate the odors of driving thru a valley where the farmer was spreading fresh manure on his fields! Even our new Yankee Candle Thin Mint air freshener couldn't cut thru that!

We arrived at Niagara Cave and hit the bathrooms while Shannon bought tickets for the tour that would start in 10 minutes. We quickly got our warmer gear on as the cave was 48 degrees and I strapped Evan in the carrier.

The Cave was discovered in 1920 when 3 pigs at a nearby farm fell down a sink hole. When the farmer sent his sons and some crew to search for the missing pigs, they discovered the cave. A few years later some men decided to open it to the public after renovations were made for stairs and electricity. It is rated one of the top 10 caves in the US and it was definitely worth it!

The indoor waterfall and wishing well was very neat.

I don't think Evan knew quite what to make of it. And by now he had only slept 10 minutes instead of his usual 2 hour morning nap.

The cave even had a wedding chapel where 4-5 weddings per year are held. Can you imagine walking thru narrow paths that are wet and dimly lit for a very small wedding? It would be an memory you would never forget, that's for sure!

It is always amazing to me to see the effects that water has on rock over the years.

There were some areas that we walked thru that were so narrow my shoulders almost touched the walls of the cave!

One of their favorite parts were when we could see fossils in the walls as we walked by. They have been talking for a few weeks about fossils and if they would find any! The fossil that looks like a snake skin in the center of the photo is actually a fossil of a lily pad stem!

The big kids thought the cave was really cool. Sara even got to lead the group back thru the walkways and to ground level. We had to tell her to slow down a few times because she got so far ahead that we couldn't see her. Evan finally fell asleep the last 10 minutes of the walk. My higher body temperature must have soothed him to sleep as I was huffing and puffing up all the stairs!

Adam and Sara have been talking for 2 weeks about panning for fossils and gemstones! They finally got their chance.

They couldn't wait to show me their treasures! Then they got to shop in the gift shop with some money Grandma Sue gave them. Decisions, decisions! Adam bought a sling shot with a raccoon carved into the handle and a metal pencil sharpener that is in the shape of a cannon. I am sensing a theme! Sara got a gemstone that looks like a big red ruby and a gemstone carved in the shape of a pink dolphin.

Thankfully there was a little sandwich shop here so we could buy lunch on the go and make it back to Rochester just in time for Sara's appointment with Dr. Sas.

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.

Cancel that surgery!

About 6 weeks ago we scheduled a consultation with Sara's pediatric urologist to touch base and see where we go from here. It did not go well and I got so upset I left his office crying and feeling very dejected. More on that another time.

In preparation for the visit, I requested that Sara get an x-ray to check on the progress of her kidney stones since she had started her new medication. The last thing I expected to hear was that she was trying to pass a stone. It measured approximately 3mm and was in her ureter.

We got a repeat x-ray 2 weeks later to see if there was any movement. I was certain she had passed it because she had one day that she was very "off". She didn't eat her lunch at school, refused dinner, and was very whiny with Shannon. She went to her spring concert at school and participated completely with no issues. When she came in the back door, she said she was hungry. Or maybe that she didn't feel well. Heat her some dinner. Or maybe she felt like she could throw up. Well, which is it? I finally heated her some dinner. Her response was to take 1 bite and throw up in her dinner plate. Multiple times until I was running for some kind of container. The next day she ran a very low fever and then was back to her normal self. Unfortunately, the x-ray a few days later showed the stone stubbornly remained.

Another 2 weeks went by and Dr. Rhee felt it was time to schedule a procedure to have the stone removed. A cystoscopy/ureteroscopy was originally scheduled for last Thursday. However, I called the doctor back and asked if we could postpone one week because Sara was in her final days of school and it didn't seem worth it to miss so close to the end. Since she was not having any pain or complications, they agreed. The surgery was scheduled for this Thursday, as in tomorrow.

We sat down as a family on Sunday and told Sara and Adam what would be going on. Sara's response? "I passed the stone, Mama." "You did? When?" "I don't know. One night last week when you and Dad were in the kitchen." I told her we would keep praying and check on it with an x-ray before surgery.

Yesterday I left work early to take her to the hospital for the x-ray. They had her previous image up for comparative purposes with an arrow pointing to the stone in the ureter. One of the technicians made a comment that she had never seen so many stones in a child before. That's always comforting. I left frustrated. I couldn't see anything on the x-ray because the image wasn't very good on the older machine.

It turns out that wasn't the reason. I couldn't see anything because it wasn't there! Sara was right--she had passed the stone. The doctor's office called today to cancel tomorrow's surgery!

How she can pass a 3mm stone with no pain is beyond me but that is typical for Sara.

I spent all day walking on air with excitement, sharing the news with everyone I came in contact with! I called Sara on the phone from work and told her the news. She said "Yay...what are we going to do tomorrow instead?"

"We are going to have a day of fun, baby girl!"

How has it been 2 months?

Oh, I don't even know where to begin. I have been putting off this post but it makes me feel like my life is on hold if I don't finally put it into words.

March 26. It was a Thursday. A very hectic week because our semi-annual Twin Sale was that weekend and I was the new Chairperson. I told my mom to take a break for the day because she had been helping Mon-Wed and would be back Fri-Sun. She kept asking if I was sure--she could come over and help clean because my cousin Emily was coming, or fold laundry. No mom, you have been helping a ton so just take a day to rest. I can't ever remember a time that she said no when I asked her for help.

That night I was frantically working on details for the sale but Emily needed help sorting her sale bins that had been stored in my basement. We didn't get to it at the last sale because I went into labor. So Emily's mom texted my mom and said something like "can you go help Emily with her bins? They aren't done since JoLynn's in the hospital." Mom walked in my back door, out of breath, and in a panic saying "You aren't in the hospital!" Nooo...She thought Robyn meant that I had gone to the hospital that night but she meant from the last sale. Looking back, that was my last glimpse of how passionate my mom's love was for me.

Mom and Emily worked a few hours and around 9pm we sat around the table and enjoyed a piece of cherry pie together that Emily brought from The Lake Geneva Pie Company. My favorite. Somehow we got on the subject of having a hard time hearing things and I said "speaking of not hearing well..." My mom got this big smile. I don't know how to describe it but I can close my eyes and still see her sitting next to me with that smile. It wasn't a look I saw often but there was joy on her face. Emily looked at her and said "you know what she is going to say don't you?" and mom shook her head yes. I proceeded to tell Emily about our recent dinner conversation with Sara. Mom struggled frequently with hearing correctly what the kids would say. Sometimes they would talk too fast or not enunciate but she was also hard of hearing. I had been telling Mom that if she didn't hear them well to not make a guess as to what they said because it usually wasn't anywhere close and then Sara would get frustrated and tell her she needed to get her hearing checked! But on this night, Sara said something and Mom repeated it. Sara, all excited, gave her a thumbs up--"Good job, Grandma, you got it right!" We had a good laugh and then Mom told us she needed to head home before the Boogie Man got her as she didn't like driving in the dark.

March 27. Friday. 7:45am. I put the kids on the bus and Shannon and I left to set up for the Twin Sale downtown. Mom was supposed to be at the house by 9:15 to watch Evan so Emily could take her 2 littlest to my neighbor's and she could join us downtown. Emily texted me at 10:15 and said Mom wasn't at my house yet. It wasn't like her to be late, especially not an hour late. Emily took all 3 kids to my neighbor's and I started calling Mom. And calling. And calling. And calling. I had a fleeting thought of what if she was dead but dismissed it like I had all the other times she didn't answer but was napping or her battery was dead or she forgot her phone outside somewhere while she was pulling weeds. Shannon left to go check on her.

11:00am. I will never forget this moment. I was standing at the front of the gymnasium and turned around to find Emily in front of me. She took both my hands in hers, cocked her head to the side, and with tears in her eyes said "She's gone."

"What?"

"She's gone. She went to sleep and didn't wake up."

We stood there for the longest time holding each other while I wailed in her ear. The first thing I thought to ask was whether I treated her well during our last time together.

And then my whole world changed. Forever.

One more med for Sara

The results came back on Sara's recent 24 hour urine test. We had to collect all of her urine in a 24 hour period and send in a sample of it. Then they ran a full array of tests on it to check her kidney function.

For the first time there is calcium showing up in her urine, which means her body is not fully processing all of her calcium properly. Sounds familiar from our conversation with Dr. Nguyen at the beginning of February!

To help with that she will now be taking a third medication that is a diuretic called Diuril. This is also the medicine that Dr. Nguyen wanted her to start taking! We are having her take it in the morning as it can cause her to have to go to the bathroom more often.

A side effect of this medicine is that it can lower her potassium levels, which can further affect kidney function. We will do blood work in a month to check her levels.

Sara's urine output was also a little lower than he would like. It is probably plenty compared to most kids her age but she needs a sufficient amount to keep her kidneys flushed. Thankfully, her kindergarten teacher is a great partner. Sara takes a 12oz thermos to school. She needs to drink 1 before lunch, 1 with lunch, and 1 in the afternoon. Plus 6oz of juice with breakfast, 6-10oz of milk with dinner, and more water that she asks for at home. Holy smokes! She is probably drinking more water than some adults.

We are still anxiously awaiting the genetic test results from Mayo Clinic. Once those come back we will schedule a consultation with Sara's urologist to discuss a plan of action.