Thursday, November 30, 2017

I just wanna be normal

I had a very significant moment with Sara tonight.

Her doctor at Mayo Clinic requires her to drink 50oz of fluid every day. We break it up into 5 - 10oz portions per day. Orange juice for breakfast, 1 thermos of water before lunch at school, apple juice at lunch, 1 thermos of water after lunch at school, and 10oz of milk with dinner. This school year has really been a struggle for Sara to finish her afternoon water. They change classrooms for the first time and there is added pressure of accomplishing more things during the day. I have asked Sara to come home with half her afternoon thermos gone. Some days she does great. Some days she doesn't.

I know what pressure from a parent is like. My mom had very high expectations for me. I often felt like I wasn't enough. I promised myself that I would be different as a parent. And then Sara's medical issues came up. As time has gone by, the doctors have placed more expectations on us and then I feel pressured to comply or deal with the alternative--more unexplained kidney stones and more surgeries for my baby girl.

Sara was starting to practice piano tonight and I went in her room to talk to her about her water thermos that I found out at the swingset, still 90% full.

"Sara we have had 4 days this week and 3 of those days you have brought your thermos home almost full to the top. You can't go 4 hours without drinking. It's not good for your body."

Her eyes began to well up with tears.

"You have a hard time some days, don't you?" She nodded.

"You just want a break some days, don't you?" She nodded, tears running down her cheeks.

Crying now, too, all I could say was "I understand."

I just wanna be normal, Mama. I want to be able to eat whatever I want for lunch and not be hungry at the end. 

"I understand. I get tired of looking at food labels for everything you eat. I get tired of counting sodium, weighing your food, and telling you that you can't have things. Some days I want a break, too. If I had to do what you do, it would be really hard for me. And you are 8. But the thing is, God didn't make you like everyone else. He made you unique. And we just don't have a choice. So on the days that we are tired and want a break, we have to cry together, take a deep breath, and start over again tomorrow. It's okay to come home at the end of the day and tell me you had a hard day and I will do my best to be understanding."

And then we held each other, crying. She is wise and strong beyond her years. It took me until my 30s to be strong enough to know that it is okay to cry, take a breath, but then start again tomorrow.

I would take it away if I could, baby girl.

I wish you could be normal, too.

Sunday, December 25, 2016

Agents of Change at Mayo Clinic



We knew in June that Sara would need her next follow up visit at Mayo Clinic near the end of the year. I wanted to coordinate with her Christmas Break schedule to minimize the number of days she would miss school. Finally at the beginning of October, doctor calendars were posted for us to set appointments. Adam was also due for a routine annual ultrasound to make sure scar tissue had not reformed from his uretero-pelvic junction blockage surgery in early 2013. After our local doctor told us he was out of answers with Sara and wanted to wait for her kidneys to fail and just do a transplant, we lost all trust with him and weren’t comfortable doing Adam’s follow up with him either. Instead, we decided to take Adam with us to Mayo and meet with the doctors we are most familiar with now.

December 21 is what we settled on, the first day of their winter break from school. December 21. There was just something about that date. The date and the appointments were on my mind often and I felt anxious about it. I finally realized it was the same day Sara had her Boston surgery. An experience that goes from a 4 hour surgery and overnight hospital stay to 11 hours and 4 days in the hospital, including Christmas, kind of stays with you. I will never forget that image of seeing Sara for the first time in recovery. She was in so much pain after that and didn’t smile for days. 


I asked her a month ago what she remembers about her Boston surgery and she just stared at me blankly. She doesn’t remember the aquarium and other fun things we did. She doesn’t remember the hospital with fish tanks all over and the cool trains that delivered meals. She doesn’t remember anything about the pain or throwing up on the airplane home or how hard it was. I was thankful and didn’t ask too many leading questions that would give her a memory that her mind had already erased. Then I asked her if she remembered anything about her first surgery at Mayo last summer. “What do you mean?” Well, Boston was a long time ago and you were very little but Mayo was not that long ago. Do you remember anything from that? Again I got the blank stare. She remembers playing Bingo in her room via video conferencing and winning a doll. She remembers playing a video game with Adam where cows jumped over bales of hay. That’s it. She doesn’t remember any ambulance rides. She doesn’t remember the surgery. She doesn’t remember flying on the airplane and having drainage bags attached to her back for days. As a mom, I will take on the burden of remembering every little detail if it means she has no recollection. I have learned even more the importance of keeping it light. I don’t even recall asking for the gift of having Sara’s memory wiped from these difficult experiences but what a wonderful gift that is!

So I have been breathing alot lately, trying to calm myself of the anxiety that December 21 brings.

December 20 was an early dismissal day for the big kids but we pulled them out of school in order to make the drive to Minnesota. We stopped by school on the way out of town so Adam could pick up a present he had made us and didn’t have a chance to bring home. Monday was a snow day, or rather cold temps and icy conditions day. Sara’s teacher happened to stop in the office while I was there and she asked if we wanted to take Sara’s gingerbread house with us to decorate. Sara was heartbroken when school was called off Monday because she knew she would miss that project that she had been looking forward to for a week. The teacher headed to her classroom and came back with a graham cracker house assembled, already attached to a cardboard disc and a bag full of candy to decorate and an icing bag! She then brought down a second house for Adam. So many kids were out sick that she had extras! What a wonderful surprise for the kids! They decorated them Thursday night once we got back to Iowa. Adam decorated his and then we heard a giant crunch as he bit into the roof. I think it was a little challenging since he is missing his 2 front teeth!



We drove to Cedar Rapids to have lunch with Shannon’s parents and leave Evan for 2 days. It was his first time being away from both Shannon and I. Thankfully, he is so easy going that I wasn’t worried about it and I had plenty of other things on my mind. Then we got back in the car and drove the rest of the way to Rochester, about 6 ½ hours in the car total. A quick stop for dinner and then we visited my aunt Robyn for a bit who had knee replacement surgery at Mayo the day before.

Off to our hotel room and what a room it was! We have enjoyed staying at TownePlace Suites a few times and this time they had the 2 bedroom suite available. That’s 2 actual bedrooms with doors that shut, which is huge when traveling with kids. So the kids had their own bedroom with a closet and a full bathroom, we had a bedroom with closest and bathroom, a living room, and a full size kitchen. Since it was late and they were both getting a cold, you would think they would have been tired enough not to pester each other when sharing a bed. I guess it is just too tempting. He hit me. She kissed my butt. Really? We moved Adam to our room to fall asleep and even then he laid there awake until 9pm for some reason.

Shannon and I ate breakfast in shifts to let the kids sleep. Adam had a breakfast sandwich to go and Sara had to fast for her EXU test at 10am. We left the hotel at 7:20am to get parked and stop at the Business Office to pay our bill for the day since we don’t have insurance. First ultrasound appointment was at 8:00am. Of course, even though Adam was scheduled for that appointment, he volunteered his sister to go first. The tech was great and made the 1hr + pass pretty quickly with all the questions she asked the kids. It was also interesting to learn that they don’t let the sono techs work in the peds area for more than 4 hours in a day or more than 1 day in a row. You never know what kind of challenge you are going to get with kids and it can be very difficult as a shift. It was nice to hear a small way that they honor their employees.

9:30 and we were off quickly to get to the parking deck and head down the street to St. Mary’s for Sara’s EXU test. The EXU is a radiological test with contrast to check how things flow thru the kidneys, into the ureters, and then the bladder. It was to help see if the 3 areas of her left kidney that were a pinpoint size opening at her last surgery in May had remained open or scarred shut again. We made it there right at 10:00 and checked in. We waited…and waited…


 
One by one we heard other people’s pagers go off in the waiting area. At 10:45, I realized everyone had been called that was there when we got there and now they had been calling people back that got there 30 minutes after us. I wandered up to the desk and started playing the mom advocate card to see what was going on. The man working registration looked us up in the computer and started making calls. I heard him say on the phone, “So you aren’t sure if you do this test? Should I be calling CT then?” After 5 minutes he hung up and told me they had to research some things and would be calling back. So we waited, and waited some more…


At 11:20, I went back to the desk and the man was gone. Another woman said he physically went back there to see what was happening because he knew Sara was fasting and he wasn’t hearing back. She hadn’t had anything to eat or drink since 6:00 the night before.

At 11:40, the man came to tell me someone was on the phone that I needed to talk to. The caller introduced herself and said we needed to come back down to Mayo and they would do the test on 16 East where we were for the ultrasound. I said okay and made sure they would still be able to draw blood when they put the IV in to save an extra stick. She told me they would draw her blood out front. I said that I didn’t want a separate blood draw and was assured they could take blood at the time they put the IV in for the contrast. Then the woman told me they didn’t do IV contrast in that department so they were going to have to do more research where we could have the test done. She took my cell phone number and said she would call me when she had it figured out. The man at the registration desk told me they don’t do that test anymore and it shouldn’t have been ordered. Unbelievable. We gathered up all our things and walked to the lobby in order to get cell coverage. Shannon and Adam went to the cafeteria for lunch while Sara and I played on the iPad.

At 12:15, the pager went off and we gathered all our things and headed back down the hall. Multiple people met me and started apologizing profusely. They were prepping a room and would be taking us back in a few minutes. Shannon found us and then got me a granola bar before having to leave with Adam to go back to the Mayo campus for Adam’s 12:45 urology appointment with Dr. Granberg for his ultrasound results.

At 12:30, 2 people came out and apologized again, handing us a free parking pass, 4 vouchers for free snacks, and $10 to be used in the cafeteria for our inconvenience. I had explained to the kids 3 hours earlier that we were going to have an attitude of patience and flexibility today because we didn’t know how the day was going to go. Good thing I said it out loud and had a chance to model it. I told them I was glad I said something to the registration desk when I did and I knew it was not typical service from Mayo.

They pulled a nurse in from the CT/MRI department to start doing vitals and coordinating the IV and labs. To add to the excitement of the day, they forgot to put a hospital ID band on Sara. The nurse knew it was a rush to get the labs processed in time for the nephrologist to analyze results before our 3:25 appointment so she had an extra person come right away to begin the analysis on her cart. The IV port went in very well but I knew something was off when he flushed the line a little and asked Sara if she felt any burning. Then he asked the lab tech if any of the vials looked thick. Of course, one did, and he pulled the IV out right away. He thought he had chosen a good vein but it wasn’t strong enough to support it. If the contrast got into her body instead of in her vein it would be damaging to her body and he didn’t want to chance it. He found a new spot, redrew the one vial of blood and got her ready for the IV.

By now it was 1:00 and 2 ladies poked their head in who seemed like they didn’t really know where they were supposed to be. They verified Sara’s name and said they were going to take her to x-ray. They wheeled her in the hall and then had a discussion about which direction they should go to get there. I made a comment like do you really know what you are doing? They said they are used to someone else bringing them their patients instead of getting them themselves. So these were the 2 x-ray techs that were going to be doing Sara’s EXU.

We got into the room, transferred Sara to the x-ray table, switched out pillows, and started getting supplies ready. Their story was that although the registration desk could see Sara’s name and the test that was ordered, it never showed up on radiology’s to-do list because radiology doesn’t do that test anymore. They have changed for them to be with a CT for adults but don’t want kids to get that much radiation. More pieces to the puzzle as to why this all went wrong today.

There were 2 “balloons” that they placed on Sara’s lower abdomen that looked like a flat, square Ace Bandage. When the tech squeezed something like a blood pressure cuff bubble, they expanded. A flat foam board went on top of the balloons and then a velcro belt to hold it all tight. The balloons would be expanded to push on her abdomen so the contrast would stay in her kidneys until they filled and images could be taken. Then the belt would be released so the contrast could drain thru her ureters and into her bladder while taking more images.

They were ready to start the test and went to find a free nurse from CT to put the contrast in. For someone reason there were no orders in the system for contrast and Sara had no ID bracelet so the nurse had to find someone to give verbal authorization. Finally at 1:30, they took their first x-ray image. Then we waited. Another image at 1:45. I could tell we weren’t going to make our 2:15 urology doctor appointment with Dr. Granberg. I had no cell signal but did have wi-fi so I emailed Shannon hoping he would get it and coordinate rescheduling the appointment. He got it and actually had just been called back for Adam’s appointment, 1 hour late!

Every 5-15 minutes they took another x-ray image, sometimes putting a wedge under Sara’s side so it would lay her kidney out more. Finally they took the Velcro belt off and asked her to sit up and cough, hoping the contrast would drain more. She went to the bathroom and then they took another x-ray. At 2:10, they wanted her to sit up on the table until 2:30 and then take another x-ray. The 2 techs were absolutely wonderful. Sara loved answering all their questions and telling them stories. They found a teal colored felt owl that the volunteer team made to give Sara before their shift ended at 2:30 and another person took over. She was finally released to have the IV shunt taken out. You could tell by how red and irritated it was that it was going to bruise pretty bad. We found our way back to our room a little before 3 and she dug into the banana I brought and gulped down some water—21 hours without food or water and not one complaint out of her! Off we went to the cafeteria to track down more food, only to be disappointed. All the hot food was put away until 4:30 dinner so Sara settled on a bowl of cereal and I had a bowl of broccoli soup.

We caught the 3:30 shuttle back downtown to the Mayo building and headed to the urologist for our 2:15 appointment. They called us right back and Dr. Granberg came immediately with 2 other staff. She apologized for the day and expressed her frustration. When the radiology department wanted to cancel all EXU tests, she told them they were still needed for pediatric cases and they promised whenever she ordered one they would do it. But there are only certain staff who know how to do them and certain radiologists who know how to read them so you just hope those people are working on the days you need them. Apparently they had been calling her throughout the day to discuss the test, how to administer it, how often to take the x-rays, etc. No wonder she was running an hour late in seeing Adam! She said they were having a clinical symposium the next day and everyone important would be in the room to discuss what happened and how to change procedures so it never happens again! It makes me feel better that we were part of a process to make sure other families that follow behind us experience something better than we did.

Dr. Granberg moved on to Sara’s test results. The ultrasound revealed that stones were still present but her burden had not increased, so there were not more stones than previously noted. The largest was 0.7cm, or a little over 1/4". She pulled up the EXU x-rays and drew a picture to explain just how unique Sara’s anatomy is. The new diagnostic phrase we have heard this time is infundibulopelvic stenosis bilaterally (both sides). This is a “rare renal malformation”. When doing some reading on the internet about it, I found the results of one study that was done over a period of 17 years. 11,500 EXUs were performed as part of that study and only 3 children had infundibulopelvic stenosis.

Most kidneys contain wide passageways that lead to small sacs inside the kidney. The image below is an EXU of a normal kidney. Look at the white tree branch-like images in the top quarter of the photo. Those are the insides of the kidneys illuminated with contrast.


Sara’s passageways are very tiny and she has numerous sacs that are enlarged. Think of a large sucker with a small stick. Those large bright white areas are the insides of Sara's kidneys, which is what makes the malformation of her kidneys very rare.


The EXU showed the contrast was moving thru Sara’s ureters and into her bladder, which is a good thing. Dr. Granberg had been on the phone with Dr. Sas to coordinate communication about the results. She had also called Dr. Krambeck at her new hospital to give her a report. Because Sara is asymptomatic and her kidneys are functioning well right now, Dr. Granberg feels it is best to just monitor Sara for now. She did want one more x-ray to see whether that left kidney had drained all the way but she didn’t want us to sit at the hospital waiting any longer. While we were meeting with her, a page came thru that because we are self pay, they wanted to charge us for the additional x-ray. All 3 staff thought that was ridiculous because it should have been included as part of the EXU. They finally got it worked out and we had to go back to Mayo 16 East where our ultrasound was for a quick x-ray and then go see Dr. Sas in nephrology.

We headed up to see Dr. Sas around 4:30 (our appointment was supposed to be 3:25). Sara is on track with her growth rate and her blood pressure and other vitals are good. Her bloodwork and urine analysis look great. Her protein levels have improved and that would be an early indicator of kidney failure. Her calcium levels have improved. She hasn’t had any UTIs, no pain, no symptoms, and her stones have not increased in size or burden. Dr. Sas feels we are on the right track with diet and medications.

The broad spectrum genetic test we have been waiting on is now in the testing stages. Once the stones are under control, our goal is to preserve the kidney function. Sara’s teenage years will be the next taxing time on the kidneys due to extreme growth spurts. Dr. Sas is hopeful that adulthood is easier to manage because her urine content should change to produce less calcium. However, Sara is not and never has been a textbook case so she will have to continue to be closely monitored. In the words of Dr. Sas, “Even the great Dr. Amy Krambeck is amazed!” and she is seen as the world’s leading expert on kidney stones.

Sara’s next follow up will be in 6 months for a 24 hour urine test, bloodwork, and ultrasound. Adam’s report was that his ultrasound still showed a small amount of dilation in the kidney that had the blockage where it drains, really only a 1 on a scale of 10. This was no change from his ultrasound 2 years ago. Dr. Granberg feels he is doing so well that he can wait 2 years for the next ultrasound, instead of just 1 like we originally thought.

We are still breathing a sigh of relief with Sara’s results. This is the first time in 2 years that we have gotten results showing a status quo or improvement! It really is an extreme amount of stress to manage her food and water. Some days are easy and others she fights me all day long. I am so thankful we got a win for those efforts finally, even if it may only be a short-term win.

The day of testing turned out to be so exhausting that we just went out for dinner and then back to the hotel to put the kids to bed. I was even in bed at 8:30. The next day we did a little swimming before packing our suitcases. It was fun to see them just be kids for a while, running in the water and going down the slide together over and over and over again. 



Then we headed out for a little Christmas shopping, had lunch, and left for the return trip to Iowa. Evan was so excited to see us—I got a great big “MAMA!” Of course, he loved the giant penguin we bought him. He did wonderful with Grandpa George and Grandma Sue and they thoroughly enjoyed their time with him.


Thursday night we relaxed and Shannon’s sister and her family came in preparation to celebrate Christmas the next day (Friday). Back to Peoria Friday afternoon. We were only gone 4 days but it sure felt like more than a week.


Sunday, August 21, 2016

Back to School Party

At the beginning of the summer, Sara bought a fun party magazine while shopping with Shannon that had all kinds of food ideas in it. We did not have a friend birthday party for the big kids this year because we were in Minnesota on Spring Break for their birthday so I asked them if they would like to have a back to school party. Of course I got a resounding "YES!!!" It was one long summer when they asked every week when their party was going to be!

We agreed that they could each invite 4 friends and they picked their invitations, plates, and napkins together. We looked thru the magazine several times before they finally agreed on which dessert we would make. Thankfully they loved my idea of being able to have each of their friends make their own pizzas and we threw in some carrot sticks and apple slices.

Unfortunately, only two friends for each of them were able to come but Adam and Sara remained excited. And six 2nd graders is still enough running around! We searched for ideas of things to do online and came up with the idea to do five "Minute to Win It" games.

First up was the Marshmallow Game--using pencils for chopsticks, how many mini marshmallows can you transfer from one plate to another in 1 minute? This one turned out to be very difficult. Only 2 kids really excelled at it.



The next game was Suck It--using a straw to suck an M&M up to it, transfer them from one plate to another. What a great idea, until you have a little brother that keeps walking around stealing them!



The third game was Scoop It--using a spoon in your mouth, scoop a ball out of one container and transfer it to another. Shannon showed them how to do it and all the kids struggled except Adam! I love the look of determination on his face! Notice that Evan is now strapped in his high chair so he stays out of the marshmallows and M&Ms!




The fourth game was Squirt It--they had to use a squirt gun to propel a matchbox car and the one who got it the farthest in a minute won! If only Evan would stop walking off with the car!





The last game of the night was Bucket Dash--transfer water from one bucket to another with a sponge. There were just a few points separating first place from third so the winner of this last game could change the overall Grand Prize winner who was going to get a Dairy Queen gift card. It was fun to see the kids root each other on.




Once they were thoroughly worn out, it was time to head inside and make their pizzas. I wish I would have had a picture of 6 kids lined up at my counter all making their own unique pizza but it was pretty chaotic!





Lastly, for dessert the kids chose a lady bug cake! It was super fun to make with them and a big hit with all the kids.



Everything went surprisingly well. Adam and Sara had so much fun having their friends over. It was certainly nice hearing lots of laughter as everyone ran around in the back yard. We may have started a new tradition!

Friday, June 3, 2016

Mayo visit #4 and 5

Sara was due for a routine follow up with her Mayo Clinic doctors toward the end of April so we asked if it could be a little sooner and coordinate the timing with a vacation during the twins' Spring Break at the very end of March. Thankfully, it worked out for us to spend a week in Minneapolis and Sara and I drove down to Rochester for one day of appointments.

We had an early morning start of bloodwork and a urinalysis, followed by an ultrasound. We had already submitted a 24 hour urine test 2 weeks earlier. This is our routine schedule for follow ups. Despite all of our efforts with strictly limiting her sodium intake to 1,200 mg per day, drinking 1 1/2 liters of fluid in a day, and increasing her Diuril medication, all of Sara's test results came back worse than the previous follow up in October. The stone on the left that was 7mm in October was now 1.5cm. She had more stones than previously and they were bigger. Dr. Sas was frustrated but certainly not giving up. This course of treatment is typically effective for 98% of cases. He increased her Diuril medication once again to see if that would make a difference. Dr. Sas is also hopeful that a broad spectrum genetic test will be completed soon and Sara would be the perfect candidate to see if something is going on genetically that we are unaware of.

The next day Dr. Sas called to tell us he reviewed Sara's results with Dr. Granberg, her urologist. Dr. Granberg and Dr. Krambeck, her surgeon, both felt Sara's stones were bad enough to warrant another surgery, possibly this summer.

This whole follow up visit was so disappointing for me. We had been working diligently on her fluid intake. Meals were carefully tracked and weighed down to the gram to fit within the sodium limits. To know all of that effort was made and still the stones were forming was really difficult for me. Honestly, I have been very quiet about it because when I talk about it, it makes it more of a reality. And I am just tired. I have been advocating for Sara and her kidneys for 4 1/2 years. It feels like a lifetime and we have gotten nowhere. Yet when I look ahead, she is only 7 and we have a lifetime to go.

On April 27 I got the phone call that the date for Sara's surgery was set for May 24. She would miss the last 2 days of school. She had already missed the beginning of the school year because of surgery so I asked if they could push it back a little. Unfortunately, the surgeon (Dr. Krambeck) is leaving Mayo in June. Considering that she told us last May that Sara's anatomy is so complicated she would recommend not having anyone else operate on her, it was an easy decision to keep the May date.

Logistics are always a challenge to work thru. Adam still had school, as well as 2 baseball practices that we did not want him to miss. And Shannon only has so much vacation time. We decided to divide and conquer for this trip. Sara and I would fly while Shannon would stay at home with the boys and the regular sitter would come for 3 out of the 4 days I was gone.

Sara and I took a 7am flight out of Peoria and made our connection in Minneapolis. Since we had a few hours, we walked around to find this children's play area and a nice little bookstore to do some reading.

 After a quick 20 minute flight, we ate lunch at the airport in Rochester and took a taxi to our hotel downtown. Sara always thinks it's neat that she gets to ride without a car seat. Her new monkey from the airport gift shop sat next to her with her legs crossed, too!


We dropped our bags at the hotel to relax for 30 minutes and made it to Mayo for our first doctor appointment with the surgeon, Dr. Krambeck at 2:30! She reiterated that she would try her absolute best to limit the surgery to a bilateral ureteroscopy. This is less invasive as a scope goes thru the ureters and there is no incision and is considered outpatient. However, there was a chance with the strange shape of Sara's left kidney and the size of the stones on that side that she would need to do the percutaneous neprolithotomy--that is where they make an incision thru the back and into the kidney for extraction like Sara had last summer, which would involve a one night hospital stay.

There are no studies which confirm that procedure affects kidney function. However, a small part of the kidney dies where the incision point is so it must have some affect. Her bigger concern is blood loss of the kidney and each time you poke into an organ, there is a greater chance for that being a concern.

I asked Dr. Krambeck her opinion about the health of Sara's kidneys. Our local doctor in Peoria always wanted to be very clear and up front that Sara will need a kidney transplant some day. Not if, but when, and they would not keep up with her growth demands as she got older. We have never really discussed that at Mayo and focused more on what was urgent at the time. Dr. Krambeck said you only need 1/3 of 1 kidney to function and Sara is far from that being the case.

I also talked to Dr. Krambeck about her leaving Mayo and what our future surgery plan can be since she expressed how complicated it is to operate on Sara. She told me where she would be going and that one doctor that has been training with her for the past year is staying behind to lead pediatric cases. She will also take another doctor with her to train alongside her for a year, and then he will return so Mayo will have 2 doctors able to handle these types of cases. However, if something above their skill level should arise with Sara, she is more than happy to review the films and we can coordinate with her for surgery.

We went out of that appointment and right into an appointment with Dr. Granberg. She is Sara's urologist. If the surgery turns into percutaneous, she will be following Sara's care during her overnight stay at St. Mary's Hospital. She is also in charge of coordinating communication with the surgeon and the nephrologist for a follow up plan.

I asked Dr. Granberg about the possibility of a transplant down the rode. She pulled up Sara's images on her computer and said that while parts of the parenchyma (the meat of the kidney) are thinner, it is not thin all over. She wants us to put thoughts of a transplant out of our mind and deal with it at the time we need to. Dr. Sas will see indicators of diminishment and we can go from there. What a relief that it doesn't have to be something we discuss at every appointment or be made to feel like it is so urgent.

Finally done with appointments so we headed for an early dinner in order to enjoy swimming afterwards. Pannekoeken is my new favorite restaurant! The first night we had their signature dish, which is a pannekoeken--an oven baked Dutch pancake with either fruit or vegetables on top or baked in. Sara and I both chose the fresh option that had strawberries cut up on top. Then it came with brown sugar and sour cream to sprinkle on top.


In the middle of dinner, it started to downpour rain and thunder and lightning. Sara sighed and said, "Oh, great." Apparently to her, that meant we would be spending the night in the restaurant because there was no way she was going outside. I considered buying an umbrella but it finally let up to a sprinkle and I headed outside. But I kept hearing this nagging voice behind me..."Mom, where are we going? Mom, we're going to get wet. Mom!"

Fun in the pool and she fell right to sleep by 6:30.  I packed a backpack with all the supplies we would need just in case the surgery turned into an overnight hospital stay. I called the surgery hotline at 8:15pm to find out we had to report the next morning at 6:00am. We walked to the hospital thru the underground subway level and headed up to our room on the 6th floor. To pass the time, we found a spider clinging to his web outside the window and made up stories about why he was there and why he wasn't moving. It was pretty windy so Sara was convinced he was scared. Then he was hungry and had ordered Jimmy John's. I guess our giggling was too loud because the nurse closed our door!


After an hour they finally took us down to the 2nd floor for pre-op. 6 different people came in and asked Sara's name and date of birth. I have no idea why that many people need to come in just to ask who you are and if you know what is being done. 3 of them were anesthesiologists. The first anesthesiologist was...well, the worst experience I have had at Mayo so far. He wasn't comfortable talking to Sara and led the conversation with asking me if she needed a liquid sedative to start relaxing her before she went to the OR. I told him no and explained that she has been thru many procedures since she was 3 and she does not have any fear or anxiety about any of it. Instead of taking my word for it, he questioned me 2 more times about having her take something and asked twice if I should go into the OR with her so she wouldn't be afraid. I could tell Sara was starting to feel nervous about his assertiveness and I was on the verge of asking him to leave.

At 8:00 they finally took Sara back for surgery. Why we need to come 2 hours ahead of time to spend 75% of our time just sitting around is beyond me. I headed to the cafeteria for breakfast and then up to her room to set my things down. The nurse was nice enough to turn down Sara's bed and make it more welcoming for her. I was also shocked to see that the spider we had monitored for an hour was now gone. Maybe he ate his Jimmy John's and left!



Surgery started at 8:40. I went out to the waiting room on her floor and watched TV about 2 guys driving the Oregon trail looking for old artifacts to buy. I started reading a new book about how to pray for my kids. I made small talk. I looked at the electronic board to see if there was any update. I prayed. Finally, after 2 hours a nurse updated me that Dr. Krambeck was finally done on the left side and the percutaneous procedure was not necessary and she was starting on the right side. What wonderful news!

11:30 the electronic board said surgery was done.

11:40 Dr. Krambeck called me to give me an update.

12:00 I finally pestered the nurses enough so I could be with her in recovery. Sara was doing well with minimal pain. Just tired and quiet. There was a second nurse there who was finishing up nursing school. It was a good training opportunity since they don't get many pediatric cases at Methodist Hospital--they are usually down the street at St. Mary's. The challenge with that is that they couldn't find a small enough dosing syringe to give Sara pain medication when she asked for it and when I said Tylenol would be just fine for her, they didn't have any liquid Tylenol and the pharmacy had to courier it down.

1:30 Sara was back up in her room on the 6th floor. It would have been sooner but Dr. Krambeck forgot to input orders for her to be released from recovery so we had to wait for her assistant to get out of the next surgery. Sara went to the bathroom, which was quite painful, and settled into bed to enjoy some apple juice and jello. That back pain while urinating persisted for 4 days until her body finally got used to the stents being in place and how the urine flows differently. I got her settled in bed for a short snooze and headed out for some quick lunch. The cafeteria was closed so I walked across the street to Pannakoeken for an awesome cheeseburger and waffle fries.

3:00 Dr. Krambeck came in to speak with me in person about how things went. There were 3 spots so closed in the left kidney from scar tissue (probably from her surgery in Boston when she was 3 1/2) that it was just a pinpoint opening. She had to laser them open and then dilate with a balloon. She did not think she was going to get the upper pole open but she worked for a long time and finally got it. Once it was lasered open, she found hundreds of stones and not just one big one. Dr. Krambeck believes that scar tissue is what is causing the stones to be worse on the left side. It is closing off pockets in the kidneys, causing urine to sit in there instead of drain. That urine then forms stones. One stone was embedded but she could barely see it and was able to scrape at it and get it out. She is more concerned about the stones in the collecting system because they can grow and then cause a blockage when they try to move. She isn't sure if embedded stones will grow or if they eventually will cause a problem in the organ. On the right side, she only took out 1 stone and all the others were embedded.

This is the photo she drew on the dry erase board to show the challenges she had.


The areas I circled in red are where she had a pinpoint size hole as a passageway that had to be lasered open. The blue were the locations of the kidney stones. The yellow is the stone that was embedded. If Dr. Krambeck had just gone with the percutaneous option, she would never have seen how closed off those passageways were to know that is causing such extreme issues. Another way that God is in the little details.

Dr. Krambeck is concerned that the scar tissue on the left will reoccur. She wants us to return to Mayo in 6 months for an Excretory Urography (EXU) functional study with dye. That will show if they stayed open or if they closed again. If they closed, we can consider lasering them open again and maybe it will stay one of these times. The only other option is an extreme reconstructive surgery and there is no guarantee that would be successful. She told Dr. Granberg, the urologist, what to look for and when to reach out to her at her new hospital. She put Sara on restricted activity for 1 week because she didn't want a chance of the stent to rub and affect the spot she lasered open. Her surgical notes indicated the largest collection of stones on the left was 2cm (over 3/4") and 1mm on the right and she had "severe left infundibular stenosis".


4:00 We were finally released to go back to the hotel.

Thankfully, we were able to just take the wheelchair with us back to the hotel. Sara decided on Jimmy John's for dinner. Since she hadn't eaten all day, I wasn't worried about the sodium in 1/3 of a sandwich. I thought she would go to bed early and fall right to sleep because she kept saying how tired she was but she tossed and turned for 2 hours. She also asked me to sleep with her so after I finished my work on my laptop, I crawled into bed with her and prepared myself for an unrestful night of sleep. She woke me 3 times either because she had to go to the bathroom or was in pain.

At 6am Sara woke me again to ask if she had slept long enough. I asked her to sleep until 6:30 and of course at 6:34 she woke me again saying she was starving. We headed down for breakfast. Even though she said she was so hungry, she really didn't eat much. We went back up to the room so I could shower and Sara decided she wanted to go to Dunkin Donuts and have me push her in the wheel chair thru some shops. She picked to sit in the same hot pink chair as one of our last visits! Just a plain glazed donut made her happy.


We decided to take a stroll outside since it had stopped raining. Just a few shops down, a woman coming out of her eyewear shop startled us, bent down to Sara, and asked if she had a pair of sunglasses. I wheeled Sara inside while the lady explained that it is their policy for every child to get a free pair. She pulled out a box of 6 different colors and let Sara pick. They were rubber so they wouldn't break and polarized! Sara thought that was pretty neat.

We went on down the block and found some neat fountains. I am always amazed at all the landscaping around the hospital and how nice they keep it.




By 10:00 Sara said she wasn't getting tired but she WAS tired and wanted to go back to the hotel room. She walked right in the door, crawled into bed, and fell asleep for almost 4 hours! When she woke, she said she wasn't hungry but I was starving so I finally convinced her to go to the hotel restaurant with me for lunch. She ate about 2 bites. It really wasn't very good and the service was terrible. We headed back upstairs to watch some TV and got interrupted by a very loud noise. The fire alarms were going off and they were asking everyone to leave the hotel as a precautionary measure. Thankfully, the elevators were still working because I don't think she would have made it down 7 flights of stairs without me carrying her. Quite the mayhem on the street of people outside taking pictures, and a crew of 3 firefighters entered the hotel in full gear to search every floor.





I had to send that picture to Adam so he could see the Hulk was driving the fire truck! I pushed Sara in the wheelchair around a few blocks until we got the all clear. We headed back up to the room to relax for a bit again.

Sara finally decided she was hungry so we headed out for dinner at 6:00. I convinced her to give it a try walking on her own since we were going just a few blocks. We picked a nice Italian restaurant and she chose to eat outside and enjoy the weather.


Even though she said she was starving, she only ate 1 slice of bread and about 5 bites of lasagna. We have been keeping her pain under control with Tylenol every 4 hours and Oxybutin 3 times a day for bladder spasms until her body gets adjusted.

Thursday morning we went to breakfast and I packed all our things. We ventured out for a walk and some window shopping but she still wanted to be pushed in the wheelchair. That was fine as we would be gone a few hours before checking out of the hotel. We found these great statues of the Mayo brothers. The history is rich in this area and the philosophy of the Mayo brothers still carries on today.



We found a neat kitchen gadget store and a fun toy store to browse. A landscaper was planting annuals around the campus and it was a beautiful sunny day. It was time to get back to the hotel to check out and head to lunch. Pannakoeken was close by so why not go there one more time and eat outside! We took our time and then relaxed in the hotel lobby for 30 minutes before our shuttle turned into limo ride to the airport to catch our flight mid afternoon. A quick 20 minute flight back to Minneapolis and a 3 hour layover. We ate dinner in the airport. Sara didn't even finish 1 slice of a personal size pizza. We went back to the bookstore to enjoy some reading. Sara was getting pretty tired from a long day and tried to sleep for a bit on the floor at our terminal gate while waiting for our 8pm flight home. She tried really hard to sleep on the plane but couldn't get comfortable. We were taxiing on the runway for so long that she thought we had already flown and then landed again! It was really great to get back home and tucked in bed just before 10pm.

Friday morning we slept in until 7. Adam gave me our welcome home present--apple pie that he had baked with the sitter!



I was making breakfast for the big kids when I see the box of cereal slowly move off the counter. Apparently Evan is getting quite the reach with his tiptoes!



It was a long week. We got good news to put a kidney transplant out of our minds for now. And we got bad news. Not only do we still have to figure out how to get the right metabolic balance for Sara's urine concentration to stop making stones but we have to pray fervently that her scar tissue areas remain open for urine to drain from her kidneys properly.

Next steps are back to Mayo Clinic on June 27 for bloodwork and to meet with both the nephrologist and the urologist. The next day she gets her stents removed. Quick trip this time around. 6 weeks after that she will need a follow up ultrasound to see how things are going. Hopefully we can do that locally and send the images up there. And then the EXU in 6 months, maybe around Thanksgiving, to see if those 3 areas remained open.

Sara is doing great and has been off any pain medication for a week now. She is back to her normal activities. But the more active of a day she has, she will have blood in her urine again from the stents rubbing. I am thankful for all the prayers we received and how smoothly things went.