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!