Thursday, July 30, 2015

Surgery scheduled at Mayo Clinic

We started the day Tuesday with an 8:45am appointment with the urologist Dr. Sas chose to bring on board for consultation, Dr. Granberg. As if the room isn't full enough when we have 2 adults, 2 6 year olds with backpacks, a stroller, and a 10 month old...3 doctors (Dr. Granberg, Dr. Montgomery--her assistant, a visiting doctor) and a nurse practitioner joined us in the room.

The first thing I have to say is that when Dr. Granberg walked in the room, I breathed a little easier. She was wearing a purple pantsuit--light purple pants and a deep violet jacket--and it felt like a little piece of my mom was in the room!

Dr. Granberg led off by saying that she felt Sara's renal reflux is unrelated and they are going to set that aside and not deal with it for now. The reflux is only on one side but the stones are present in both sides. She wants to leave the ureter passageways as open as possible in case any stones need to pass in the future.

I talked in the previous post about some of the stone sizes measured by the ultrasound. The CT scan notes indicate some of the largest stones--a 9mm on the right, a 10mm x 7mm conglomeration on the left, a linear collection measuring 1.8cm on the right and 1.2cm on the left. There is also a 4.5cm calcification in the right mid-pelvis that is in an uncertain location. For the first time they explained that she has stones in parts of her body other than her kidneys. Some are in her bowel, outside the kidneys, possibly her stomach. I should have asked how that can happen but it's a lot of information to take in. Dr. Granberg said just keep that in mind for when she is an adult and if she ever gets a scan, tell people not to freak out! They will probably be there forever but as long as they aren't causing a problem, it is no big deal.

They have decided a surgery is warranted to try to remove all the stones. This will not be robotic like in Boston, but percutaneous. That means she will have an incision in her back, one on each side, and a tube will be inserted into her kidneys. That tube will contain a camera and a vacuum to suction out the stones. They will do an x-ray or ultrasound after the procedure to make sure all the stones were removed. Dr. Krambeck will be doing the surgery and Dr. Granberg will be there, as well. Dr. Fleming, an interventional radiologist, will also be involved to help with the placement of the tubes since this is a pediatric case. There is a chance the tube could puncture Sara's spleen, bowels, lung, etc. If the first kidney goes well and there is no strain on her body or excessive bleeding, they will do the second kidney while she is still under anesthesia. If her body needs a break, then they will transfer Sara to inpatient to rest for 2 days and then do the other side. The procedure should last 1-2 hours and there will be transport time over and above that. Dr. Fleming will place the tubes and then she will be transferred to the operating room of the hospital for surgery. Once she wakes up sufficiently, she will be transported via ambulance to St. Mary's Hospital down the road for her inpatient stay.

We returned to their office at 2:15pm to learn they scheduled surgery for Tuesday, August 18--her first day of 1st grade! That was the soonest all 3 doctors could coordinate their schedules. The next available date was the end of September and they did not want to wait that long. Surgery is Tuesday and if both sides are able to be done, she should be released on Thursday. If not, the OR is already set aside for her again on Thursday and she would do surgery Tuesday and Thursday and be released over the weekend. Their preference is that we not drive as it would be pretty uncomfortable of a ride home for her to be in the car that long. Recovery is 2 weeks of limited physical activity.

For 2 years Sara's urologist at home has said he does not want to do a percutaneous surgery because he is afraid it will damage her kidney's too much. It's hard to put that out of our minds and trust that we are in the best place possible. Dr. Krambeck assured us there is no evidence that this procedure would affect her current kidney health, which is very good. She feels confident about going down this path. Considering she is one of the world's leading experts in stones for adults, we trust her judgement.

I did ask Dr. Granberg if they will be using pediatric instrumentation. Because Sara's stone burden is so great, they would not fit thru that size so an adult medium size will be used. She has evaluated all percutaneous surgeries since 1980 and pediatric cases using a medium size have not had any increased damage to the kidney.

Step 1 - remove the stones
Step 2 - work on the prevention side

Talk about a lot of information to take in. I never expected when we arrived that we would be coming back in 3 weeks for surgery. Now to figure out logistics!

Monday, July 27, 2015

CT scan, etc.

We had to be at St. Mary's Hospital for Sara's CT scan at 8:30 this morning, with two 6 year olds who were up past 9:30 the night before and a 10 month old. Shockingly, it went much better than I thought it would and actually right according to the plan Shannon and I had worked out (except for the 2 extra times that Evan pooped but hey...)

While in the waiting room I read the kids a few books and the tech came for the scan. She saw there was 1 parent and 2 children and gave me a look so I quickly said "Dad is changing the baby and will be right back." There were specific instructions that siblings were not to come along unless supervision was available. She lightened up and took both the kids into the CT room so they could see how the machine worked. She even let Sara push the buttons to raise the table up and down. She thought that was pretty neat!

Shannon came back and finished feeding Evan some yogurt and hung out with Adam while Sara and I went in for the scan. They rolled up big towels to put at her sides so she kept her hands above her head, strapped her in with a gigantic velcro "seat belt", and covered her with a warm blanket. Then they practiced taking a deep breath and holding it until she told her to let it back out. I donned my radiation vest. In less than 5 minutes Sara was done and receiving 3 pink toys since she said her favorite color is pink. This homemade bear made by a volunteer team was really neat and Sara named her Isabelle. She is a great size for a travel pillow, too!





In other news, Mayo Clinic offers a website where you can set up a patient account. You can see lab results, pathology and radiology results, prescriptions, your medical history...you can send messages to the doctor and even see his notes from each of your visits. It is so cool! We have already been able to read Dr. Sas' report from our visit last week, see Sara's results from her blood and urine tests, and today they posted the notes from her ultrasound as well as all the images. And yes, there is even an app for that for your phone!

The written notes from the ultrasound are quite interesting and already give us an inside peek at some of what we will be discussing with the doctors tomorrow. Because they had Sara's historical images, the radiology doctor was able to compare this ultrasound with her last one in January. The parenchymal thinning was noted, which we were aware of. That means the meat of the kidney/outer layer is thin.

It was also noted that "Right kidney: Again seen, several obstructing renal calculi, measuring

approximately 0.5 mm in diameter." Oddly, the written document indicates the size is 0.5 mm but the image itself has a measurement tool drawn in and a note that it is 0.5 cm so we will have to ask which is correct for the right side. Also, "Left kidney: There are several obstructing renal calculi including a
1.5 x 1.3 cm calculus in the interpole left kidney. This is
increased in size since 01/23/2015." Considering that the length of the kidney is 9.3 cm, that is a huge stone. It takes up over 15% of the length of the kidney. To see it noted on the actual image of the ultrasound is crazy!

Very excited to meet with the doctors tomorrow. I have lost count how many times I have been told "I don't know. She's a medical mystery." Hoping and praying and trusting we are right where we need to be to solve the mystery.

Saturday, July 25, 2015

Laid back vacation Friday



Yesterday was a bit of a more laid back day. Evan started with a little toe snack before breakfast. I think he just likes showing off his flexibility.



Shannon took the big kids to the breakfast buffet, which has been fantastic for options. Eggs, hasbrowns, 2 kinds of sausage patties, 2 kinds of bagels, bread, English muffins, fruit, yogurt, waffles, oatmeal (with brown sugar, raisins, walnuts), 3 kinds of muffins (our favorite, of course, has been the cream cheese chocolate/chocolate chip), 5 kinds of cereal, juice, and milk.

While Shannon got the kids ready for swimming, Evan had breakfast in his new travel high chair. I quickly ordered this 2 days before we left for vacation and we have used it a lot. My cousin Emily always has the coolest stuff that I then steal her idea and buy one for myself. I think we will keep it in the trunk at home, as well. Have you ever looked at how filthy wood high chairs are in restaurants? It really is disgusting. 



Evan finished breakfast and then headed for pool time with Dad! He really loves the water, especially the lounging part. He has a killer froggy kick!




After swimming for a bit I took Sara for her ultrasound. The boys did an early lunch and relaxed with some quiet time while Evan took a nap. When Sara and I returned mid-afternoon, Evan was just waking up. Adam had been dying to try out his new sling shot so he took his handmade target and we headed outside. He really surprised me with how good he was!





Sara is always on the lookout for various nature finds and celebrated success with this clipping from a bush and a feather.



For dinner we drove to a local family farm that was doing a Brick Oven Pizza Night made fresh from the ingredients they had harvested that year. It was delicious! And the kids had fun, too.






All the animals were friendly…sometimes a little too friendly! We decided maybe this cat kept visiting us because it was Oreo’s long-lost relative.




The big kids were very confused why there were chickens roaming around. And then this goat wandered by. Apparently he is 1 year old and still escapes thru the fence opening he discovered last year. But then he snacks on too much grass and his belly gets too fat to fit back thru!




These geese kept following us and begging for food.




Adam thought the bearded goats were neat. They look deep in conversation!


We topped off the evening with some pony rides. Sara had a hard time choosing which horse to ride on until she heard this one was named Princess! She had quite the hair.


Adam rode on Spike. I liked his white eyelashes. Every now and then Adam would take his pointer finger and give him a little scratch on his mane. Apparently that was Adam’s version of petting him. Spike was a little stubborn and kept stopping for a break.



Everyone went right to bed when we got back. Sara got up at 7:45 and said, “Mom I can’t sleep any more.” Okay! Evan didn’t wake until 4:45 and then went right back to sleep until 8. That was the best sleep I have gotten in a month! He has slept thru the night since Christmas but the past number of weeks his sleep was interrupted and I was getting up 1 or 2 more times in the middle of the night with him. In Minnesota he has been up every hour or 2. I was so thankful for a good night of rest.