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.