I couldn't believe when I called in that we had to be at Methodist Hospital of Mayo Clinic at 6:15am. I knew it would be early but as I calculated what time we would have to get up, especially with Adam and Evan, I dreaded it a little. My alarm was set for 4:30 so I could get in the shower and pack some toiletries. Sara woke on her own to go to the bathroom at 5:15 and Evan started stirring at 5:30. Perfect! We had to wake Adam but he still moved along pretty well getting dressed. I nursed Evan and threw him in the car in his jammies. It felt like we were going on a weekend vacation with everything that was packed to go with us as we left for Methodist at 6am.
We breezed thru registration and made our way to the floor to check in. From the moment we got in the room and Sara got changed, the morning just took off. She was excited to get a new little stuffed animal giraffe made by the volunteers at Mayo Clinic. Adam got a dinosaur and Evan got a whale.
Around 7:30 we gathered all our things and walked with her as she was transported to the Radiology Department in Mayo Clinic for the placement of her tubes into her kidneys. I think we talked to at least 7 people within 20 minutes. Adam was in his element of protecting her.
At 8:00 we all gave her a hug and kiss and said "See you soon!" She chose to go back for her sleepy medicine with the medical team all by herself.
We headed for breakfast before going to the waiting area back in the Methodist Hospital wing of Mayo Clinic, which is where we started the morning. A good part of the morning was taken up by Shannon and I taking turns trying to get Evan to nap. We walked in the stroller, we snuggled and walked, he played on the floor. It was like none of the staff gets to see babies because every time someone walked by they had to talk to him and smile. I should have hung a "do not disturb" sign on his stroller! Finally at 11:00 he crashed in the stroller.
A nurse updated us on Sara's progress about every hour or as news changed. Adam did awesome being patient and keeping himself busy even when Shannon tried to catch a little shut eye. Evan brought a little piece of Grandma Marilynn today--she couldn't resist buying him that shirt when he was 2 months old and was waiting for him to grow into it.
At 12:00 the nurse reported they had just finished the right kidney and Sara was doing so well they went ahead with the left side. Best news ever! We decided to take a break for an hour and get some lunch. Evan woke during lunch time so we were able to feed him and I nursed him in a private room before we had to turn our attention back on Sara.
At 1:30 the nurse found us to say the left side was done and she would be moved to recovery. The doctors would come find us to talk about how it went. About 20 minutes later we were able to touch base with Dr. Granberg (who is her main urologist here) and Dr. Krambeck (who performed the surgery and is considered the world's leading expert in stones with adults.) They are both ladies and have been so patient and clear with their communication. Dr. Krambeck said the right side went great and she was very confident that she got it all. There was minimal bleeding. She wished the left side was as successful but the shape of her kidney did not allow access to the middle or upper poles. Another surgery will be needed on Thursday. She wished she would have gotten it all in one procedure but felt we had made great strides in getting down the road of being stone free at this point. They scheduled a CT scan for Wednesday to make sure all the stones were removed on the right side while they still have access to the tubes. If they did not, they would be able to repeat that side. But they are hopeful the plan will be to remove the tubes on both sides and do a ureteroscopy that will laser the openings of the mid and upper kidney to gain better access. The picture below was drawn by Dr. Granberg to explain just how Sara's kidneys are shaped and why they could not get to all of it.
A typical kidney should look like the one on the left with all the areas of the kidney connected. Instead, Sara's looks like the one on the right with three separate sections/sacs. The "stems" leading to the cavities are so narrow Dr. Krambeck could barely get the wire portion thru for the camera let alone the tube for the vacuum. The plan Thursday is to use a scope to come up thru the ureter and use a laser to widen the narrow passageway of both that upper pole and the middle pole to remove those stones. A stent will then be placed in one of those areas--she will choose the one that seems like it will close and heal the best. Ideally, she would like to place 2 stents but Sara just doesn't have enough room in her ureter to allow for 2 stents that are little tubes, as well as have room for the urine to flow when she goes to the bathroom. Thankfully, this procedure is much less strenuous.
After talking to the doctors, we decided Shannon would take the boys back to the hotel for some naps and I would go into recovery with Sara and be with her when they transported her to St. Mary's Hospital for her inpatient stay.
It was such a relief to be able to see her. She was still groggy but not nearly as poofy in the face as she was after her surgery in Boston. She wasn't sick to her stomach, had no pain, and was refusing any type of pain medication. In fact, not long after I arrived she was asking for water. Her voice was very hoarse from the anesthesia and tubes down her throat. All the staff that came in to check on her commented about how stoic she was! They were amazed she was doing that well and couldn't believe she wasn't in pain.
We finally got the okay to be transported via ambulance to St. Mary's. It was raining outside so they covered her to try to keep her dry as they loaded her in the ambulance. The EMT won her over with a new stuffed animal Cimba.
At 4:30 Dr. Montgomery stopped in to see how Sara was doing. He is Dr. Granberg's assistant. He commented on how great she was doing. The bleeding level and color from her stents looked as good as he could possibly expect. She was released to eat and drink as she could tolerate.
She had a catheter, which wasn't draining much because it was going directly to the stents. And she still had the 2 tubes coming out of each incision point in her back, which was covered with heavy gauze. One of the tubes on each side was connected to a bag which drained blood and urine from the kidneys. I was really shocked at how much she could lay on it and roll back and forth without pain. The greatest pain she has had was when they tried to remove all the tape from the gauze pads on the left because it is not draining as much thru the stent, but instead just seeping out the incision point. By the time we got to St. Mary's, it had completely soaked thru the gauze, her gown, the pad she was laying on, and the bed sheet.
All the boys arrived around 5:30 and that gave me a break to go eat dinner with Adam while Sara enjoyed some alone time with Dad. When we got back from dinner, I took Adam and Evan to the playroom down the hall for a little while. Evan really enjoyed the fish and kept trying to reach out and touch them!
Shannon also took Adam to the flower shop because he wanted to pick out some flowers for Sara. He even wrote on the card--"Love :)" This is the view from Sara's room, which is a really nice courtyard with a fountain. The cafeteria is directly below her room and looks out over the courtyard, as well.
I nursed Evan "dessert" and Shannon took the boys back to the hotel to get tucked into bed while I stayed the night with Sara. She looked absolutely exhausted and I was hoping she could get right to sleep. Instead, they needed another set of vitals and had to empty her bags. Then we discovered she had seeped thru her gauze on the left side again. The nurses were still trying different methods of foam pads and gauze and types of tape to use to get the best combination of both absorption and comfort. Finally around 8:45 Sara was able to fall asleep. I touched base with Shannon about the day and headed to bed myself around 9:30.
We woke every hour as they needed vitals and to empty the bags. At 1am Sara told me it had to be morning because she felt like she had slept long enough. I guess it's good she felt that way because we were awake for the next 2 hours. First, her dressing was completely soaked thru and had to be changed, including all her bedding again. It took an hour just to do that. 30 minutes just to remove all the tape! We learned that a "lollipop" was working well and Sara started asking for that. It is a white circular foam pad attached to a stick and it has liquid on it that the nurse applies to the skin prior to the tape so it protects the skin when the tape comes off. She has just had it removed so many times that her skin is getting sore.
At 2am the lab crew showed up to do a blood draw. After 2 attempts and pretty significant digging around both times she had to give up. Then Sara decided she was hungry and I had to go on a hunt for snacks. I finally convinced her at 3am that it was time to go back to sleep. We got about 2 1/2 hours more of interrupted sleep.
On to Day 2.