Thursday, October 29, 2015

Mayo follow up--not quite stone free

I picked Sara up from school yesterday afternoon to catch our flight to Chicago and then Rochester for our first follow up visits with Mayo Clinic since her surgery. She was so excited to have girl time and to fly.

She was an excellent helper thru the airport and wasn't overwhelmed even in the chaos in Chicago. She thought looking at the clouds was so neat, like a land of snow in the sky. And we thought we were probably a little closer to Grandma!


Shannon had reserved a taxi for us when we got to Rochester that would take us to our hotel. The driver surprised us both with a Snickers bar! And it was an extra treat because it was the first time Sara rode in a car without being in a car seat. We got to our hotel around 7, had to change rooms because it didn't have a refrigerator to store Sara's meds, and then got a sandwich from Jimmy John's. It wasn't very good but it was quick. Sara wasn't in bed until 8pm and 6am came early this morning when I woke her.

Quick breakfast and we left for our 7:15am ultrasound appointment. We stayed at the Kahler Hotel this time, right across the street from Mayo. It worked out great because we have been able to walk everywhere thru their underground walkways.


The ultrasound was a little hard, a little disappointing. It was the first time we have gotten a peek inside since Sara's surgery. They did not do any imaging after the surgery and just felt she was stone free based on looking around with the scope. I could tell there were a few times that the tech stopped to measure a stone. At the end she needed some more images after Sara emptied her bladder. I remembered we needed to provide a urine sample after the ultrasound and was able to coordinate with the lab department in the same area to get a specimen cup.

After we were done, we headed for bloodwork. Not the greatest of days for that. Sara warned the woman that her veins were small. We should have also warned that her veins roll. Multiple times. After digging around in and out with the needle 3 times, the tech pulled a cord to request assistance. I know what it feels like to have someone digging around in my arm for a needle and Sara didn't even flinch. Just as the helper walked in, the tech poked one more time and got the blood. Sara earned herself a glow in the dark duck and a rubber turtle. Thankfully, that satisfied her!

We have always enjoyed walking thru the lobby and today was no different. Someone was playing the piano every time we walked by and at one point a group of 4-5 people were standing around it singing. Many were gathered to listen and even record video.


Off to our Cinnabon treat and some shopping. We went in a cool shoe store and bought Dad some socks. Then we enjoyed a fun kids store and bought both Adam and Sara a present. Next was browsing thru some art galleries. We went back to the hotel room to drop our bags and then walk back for our urology appointment.

Sara kept telling me she wanted to go outside for some fresh air. It was 40 degrees outside and it sounded like a better option in the afternoon so I guess it slipped my mind and I headed up to the appointment with Dr. Granberg. She stepped off the elevator and got quite upset with me..."Mom, I said I wanted to go outside for some fresh air!" I looked at my watch and saw we still had time so I said okay and got back on the elevator. I tried to go out in the seating area by the flowers but the door was locked. Sara's shoulders slumped like she was never going to get outside. We walked up another flight of stairs and went out the door to the street level. She took off her backpack and handed me her thermos and announced she was going to run...and off she went! I stood there watching her and got teary eyed. Just 2 months after multiple days of surgeries here she was just running for the joy of it.


After her run, we headed back upstairs to meet with the urologist, Dr. Granberg. I can't believe with the busyness of this place that the doctor was actually on time and we waited less than 5 minutes for her to come in the room! She reviewed Sara's ultrasound with us. It is very hard to compare the ultrasound to her previous CT scan because the CT scan is able to show specific layers but you can't really tell depth in an ultrasound. The right kidney has a 2mm stone in the upper pole as well as another one and a 5mm one in the middle. Dr. Granberg looked at the images with Dr. Krambeck and they felt all of those stones are in the meat of the kidney and not in the collecting system so there is no concern with those.

The left kidney is the one that had 2 surgeries when we were here in September and is not formed like a typical kidney. The upper pole is dilated, which typically means something is causing it to be irritated. Sara's kidneys have been dilated for years but if the surgery truly made her stone free, then we should see that dilation diminish. The ultrasound did not show a stone in that area so we aren't sure why it is dilated right now. There is one stone of particular concern that is 7mm x 7mm, or slightly more than 1/4 inch in diameter. It is in the collecting system and it is slightly larger than the previous images so it was missed during surgery. 5mm is typically the limit of what you can pass and anything larger will eventually need surgical intervention. There are also some smaller stones scattered about. Of course I am not excited about already knowing that another surgery will come down the road. We are just hoping that it stays put for now because if it tries to pass, it could cause a blockage.

Her creatinine levels are the same as before, which reflects that her kidney function remains stable and the tubes inserted thru the meat of the kidney for the percutaneous surgery did not diminish their function. That is great news.

At this point they do not want to do any surgical procedures and are letting Dr. Sas take the lead with assessing how she stands metabolically.

We enjoyed a little soup and sandwich for lunch, shopped a little more, and checked in for our appointment with Dr. Sas in nephrology. Again, they called us just 5 minutes after our appointment time and he came in just a few minutes after the nurse left. He sat down in his chair, looked right at Sara and said "First of all, I have to ask you the most important question--what are you going to be for Halloween?"

We started by talking about Sara's water intake and how hard it is to monitor it when she is at school. It is totally out of my hands and she is only 6. That is a lot of responsibility for someone so young but we don't have any other choice. He told us about a new water bottle product that is a smart bottle and reports how much you drink. We may check into that.

He then started talking about her lab results and metabolic issues. First, her calcium is significantly better, which means increasing her Diuril medication is working. That was great news.

On the flip side, her sodium was really high. I was quite surprised by that because we have made changes in her diet and I thought her intake was within the range he asked for. We will be monitoring it much more closely.

Next we talked about potassium and magnesium. Both reduce the risk of stone formation. In prior labwork, both of those were more than adequate but now they were both low. He gave me some dietary sheets to give me ideas on foods that are rich in those nutrients. Again, that was perplexing to me because her diet really isn't any different than before, other than the high sodium items we have replaced with lower sodium like butter, ketchup, and bread.

Her citrate levels were also much lower, which could have just meant she didn't drink orange juice for breakfast that day.

Her brushite and calcium oxalate levels were higher than before but that could be because of a day with lower water levels and higher salt intake.

Is your head spinning? Mine is. Keep that fluid intake high, minimize the salt even more, eat more foods rich in potassium and magnesium and keep up on the citrates.

In summary, she is not significantly worse and we can consider it to be a modest victory. Dr. Sas thinks we are on the right path, even though we don't have any answers. The goal is to get to the right balance so that the 7mm stone remains at 7mm and no others form. That is when we know we are doing the right things.

He wants us back in 6 months for another 24 hour urine test, bloodwork, and comparative ultrasound. Not the best news I was hoping for but not the worst either.

We headed back to the hotel to change into our swim suits. We got to the hotel elevators and I heard this strange noise behind me. I turned to find this woman just sobbing uncontrollably as she approached us. I asked if she was okay. Now, for those who really know me, you understand just how odd it is that I talked to the woman. I am very much an introvert and keep to myself, even if I see someone I know, let alone talking to strangers. But I continued to ask her questions and learned that her car had broken down and it was towed with all her belongings in it. She spent the rest of the money she had in order to get it fixed and now she had no money to get back home to Wisconsin. She stepped off the elevator into the lobby and turned, while still crying, to tell me to have a good day. I didn't say anything and quickly as the door was closing, I said "Would you like to come with me and I will give you some money?" She was shocked. I told her I didn't have much cash but I probably had $50. She waited outside my room as I found my wallet. When I opened it, I found that I had $70. I paused, knowing that I told her I had $50 and I still had to pay for cabfare to the airport tomorrow. I pulled out everything I had, folded it in half, and handed it to her. She asked if she could give me a hug and walked off down the hall, crying and muttering "amazing." Sara looked at me and said "I can't wait to tell Dad about that!" Thanks, God!

We got our swim suits on, grabbed our map, and headed out. The pool at the hotel we are staying at is under repair but we could walk to the sister hotel thru the underground walkways and use their pool. We zigged and zagged and found our way there, followed signs up to the 10th floor, then a flight of stairs, and were met with a locked door. Back down to the lobby to explain our situation and they gave us a special temporary key card. We retraced our steps, opened the door, and...


There is Sara at the back with her arms in the air exclaiming that she has the pool all to herself! It was a neat rooftop pool on the 11th floor with a giant skylight over it! Very cool!



We swam for a bit, enjoyed some time with another family who had a little boy in a wheelchair, and found our way back to our hotel to figure out dinner. Sara didn't feel like walking anymore and was winding down from the day so we ate at the hotel restaurant and split chicken parmesan. Pajamas, meds, and read part of a book together before tucking in bed.

Another memorable thing from this trip is that Sara has been working on her first loose tooth. She has 2 loose at the same time on the bottom but a new one is already poking thru quite a bit. Every time I look over her fingers are in her mouth wiggling it looser.

I need to pause for a moment and talk about 2 other amazing behind the scenes things from this trip. First, I was having a hard time figuring out logistics since I am still nursing Evan twice a day. Shannon suggested just stopping because it would be too hard to travel with the pump and then figure out how to store it and I really didn't need another added item of stress. I conceded but was very emotional about it. I hate it that Sara's medical issues affect things with Evan and I not only did not want that to happen but wasn't prepared for it. I wasn't ever sure if breastfeeding would be "for me" but have found that it is amazing and really enjoy that time together with Evan. It was kind of the last pregnancy piece remaining that I would never get back and I was feeling very emotional about that. I talked to a fellow twin mom and thankfully she was very encouraging to push thru, especially with cold and flu season upon us. I packed the pump and have been able to store the milk fine and will get it home in a cooler with some ice packs. I am so thankful for her support, more than she can imagine!

Second, I am thankful for my Aunt Robyn, who was able to step in and be at my house while I was gone. She has cared for Evan, gotten Adam ready for school and on and off the bus, done laundry, organized some kitchen cabinets, cooked amazing meals (including a pumpkin pie), and cleaned off my kitchen counters which have been a disaster for months. For the first time ever, I am coming home to this amazing gift of my house looking better than when I left it! I feel really blessed.

This whole trip has just been confirmation, again, that we are in the right place. Today, for the first time, I really felt the sense that I am not just here to solve a short-term problem in conjunction with our doctors at home, but that Mayo is our primary care provider.

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