Tuesday, August 25, 2015

Thursday's surgery--beyond great!

Thankfully Sara's gauze dressing held all night and she got a great night of sleep to prepare her for surgery again. She didn't even hear my 5:30 alarm go off or the breast pump going so she was able to sleep another 30 minutes.

Three EMTs arrived around 6:30 to load her up and take her back to Methodist Hospital on Mayo Clinic's campus. This crew was very good at interacting with Sara and one guy in particular had a 5 year old daughter so he could relate. Sara seemed particularly quiet this morning and they were great getting her to tell them some jokes.

What did the 0 say to the 8? Nice belt!

Why did Earth stay away from Saturn? Because it is gassy!

Thursday morning's prep time was soooo different than Tuesday morning. No hustle and bustle of people in and out. No nurses taking vitals and asking a million questions. No visits from 3 different doctors. Dr. Nemergut, the anesthesiologist came in. He was already familiar with Sara from Tuesday so he didn't have many questions either. We talked the most about her sensitive skin and different ways he could apply tape to protect her. Then we waited. And waited. And waited. Sara commented she thought it was silly to come over so early just to sit around and not do anything. We read in her Ranger Rick magazine together. She was unusually quiet, even around just me. I let it be, knowing that she had been thru a lot and may be just processing another day of surgery. Dr. Nemergut came in again with his colleague. They were opening the door to wheel Sara out and he said, "Wait a minute! We need to get Cimba ready for surgery!" Then he found a hospital hat, gloves, mask, and even made him an ID bracelet. It seemed so unusal for him but his pause brought a smile to Sara's face. That was definitely a nice way to send her off at 8am.

As they wheeled her off, I stood in her room not really knowing what to do. On Tuesday there was a nurse there to guide us but not today. I asked if I was supposed to follow them and they looked at me blankly. Another staff member stepped over and asked me if I knew where I was supposed to go. They pointed me in the direction of the elevators and I made my way to the cafeteria for breakfast.

I found a booth in the back corner and for the first time in this journey I was able to have a quiet moment. As a mom, I have had to be whatever Sara needed me to be. Even though Shannon is on this trip, he and I are tag teaming the kids so much that even he and I haven't had many moments to emotionally process all that is happening together. I found myself getting weepy. God knew and sent an uplifting note from a fellow twin mom at home!

I finished breakfast and headed up to the same waiting area as Tuesday and requested Sara's 5 digit number so I could follow her progress on the monitor. Surgery started at 8:45.

Shannon and the boys arrived around 10. Time sure did pass more quickly with the little ones to keep track of instead of waiting by myself. Adam and I chatted for a bit and read part of a magazine. I changed Evan's diaper and started walking him in the stroller to see if her would fall asleep for a morning nap. At 11:15 I was heading back down the hall and the nurse informed me they had just closed Sara so surgery was over! For the first time on this trip I felt very nervous. Dr. Montgomery told us things were so complicated that the absolute best case scenario would be a 3-4 hour surgery. It had only been 2 1/2 hours so my first thought was it must be bad news and Dr. Krambeck was not able to get all the stones.

I kept walking the empty halls with my sleeping baby and then I heard, "Mrs. Mollenhauer?" I turned around to see Dr. Krambeck by herself looking her usual joyful and confident self. She asked "How are you?" I told her "I don't know, how should I be?" She answered with a big smile, "You should be great!"

What a relief!

She lasered the narrow passageways and was able to remove all the stones. "So you didn't have to do the second percutaneous procedure?" "Nope!" "And you were able to get out the really big stone thru the scope?" "I took out 8 really big stones thru the scope!" I'm tearing up again just thinking about my conversation with her in that empty hallway. For the first time Sara is stone free and Dr. Krambeck was the woman who was able to make that happen.

I went in the waiting room to tell Shannon the news and gather up our things. Within 10 minutes of being informed surgery was done they were already letting us know she was ready for us in recovery. We had to ask at the desk how to get to the recovery area because there wasn't a nurse to escort us. We went down one floor and gowned up. Shannon went in first to see her for a few minutes. Then we traded gowns because his was at his knees and mine was dragging on the floor! Shannon left with the boys to go outside for lunch and I went in with Sara to accompany her on transport back to her hospital room at St. Mary's. When I got back there, Dr. Nemergut had already released her for transport and the ambulance service had been called. Sara was very very quiet and didn't even want to shake her head to indicate whether she was in pain.

We got back to her hospital room and her nurse was shocked we were there already. An hour after surgery ended and she was out of recovery, transported 10 minutes away, walked almost 10 minutes thru the hospital, and transferred to her bed! On Tuesday she was in the recovery room for an hour before they even called for transport!

Not long after we settled in, a volunteer came in to say they would be playing Bingo in the play room. If Sara didn't feel up to walking down there we could turn on the TV and then phone in when we won. Sara perked up when she was the first person to win and she got to say "BINGO!" She picked a new baby doll as a prize. Adam arrived soon after and wanted to join in on the fun.

We discovered after putting the smallest hospital gown on her that she didn't have a gown on before but instead a shirt and it was long enough to be a gown! We had to swap this one out because it went down to the floor and she was tripping on it.

At 2:00 Evan was ready for a nap so we laid him in the hotel's pack and play that was still in Sara's hospital room while Adam and Sara went to the playroom. Around 3:30 Dr. Granberg (Sara's urologist) and Dr. Montgomery (her assistant) found us in the play room. They looked at Sara playing games just 4 hours after surgery and shook their heads. If she was able to keep food down and felt up to it, they were fine with her being discharged that night.

We talked about follow up needed. She had a bag attached to each side of her back that covered her incision to catch any seeping. We would have to empty it as needed and when it stopped draining we could remove the bags and just cover the incision with gauze. She also had a stent inside holding one of her kidney passageways open. That would need to be removed in 4 weeks and can be done in Peoria if they are willing because it is about a 10 second procedure under light anesthesia. Then 6 weeks after that Dr. Granberg would like us back at Mayo Clinic for an ultrasound to see how her kidneys look post-surgery, as well as a consult about next steps. We are hoping to also coordinate with Dr. Sas, her nephrologist, at that time.

Dr. Granberg commented on the uniqueness of Sara's left kidney and said we should not let anyone else operate on her other than Dr. Krambeck who is now familiar with the peculiar roadmap she has. It was interesting to hear the respect in Dr. Granberg's voice as she talked about Dr. Krambeck using highly skilled methods of moving around, dilating for access, and then lasering, that most doctors do not have the experience to perform. It was interesting reading Dr. Krambeck's surgical notes and stating she "spent significant time trying to find the upper calculi in her left kidney!"

Around 5 Sara got dressed in street clothes. It felt like it had been a long time since she looked "normal" and it was so nice!
 I took Adam and Evan to dinner while Shannon packed up the room. Adam gave me one of those "Mom, you promised...and we haven't yet..." so we took a stroll into the courtyard.

After heading back up to Sara's room, we learned discharge would be delayed even longer because they wanted her to eat more. Really? She wasn't nauseous after surgery either day and she had eaten jello, a popsicle, apple juice, and goldfish. Apparently they wanted "food" except the cafeteria food really wasn't the greatest. I spent the next 30 minutes fighting with Sara to even eat 1 chicken finger. By the end we were both in tears because we just wanted to leave. Shannon had gone for a walk with the boys. Sara and I had a very mature girls moment while sitting on the bed. She was sobbing from exhaustion. I put my arm around her and talked to her about how she had been so strong all week and I was really proud of her. But sometimes you just need to take a breath and cry if you need to, that's okay. She leaned her head against me and cried. After a few minutes I asked her if she was ready to go home. She shook her head yes and I got the nurse to start removing her IV tape.

The next 30 minutes was spent using numerous adhesive remover pads to get the tape off both her wrists that could have still been stuck there at Christmas. The nurse was not very sensitive to Sara's twitching and turning in pain. Twice she said she needed a break because she couldn't stand it anymore. She screamed and cried in pain at the end because I think the nurse pulled on the needle instead of the tape. So hard.

Finally at 8:30 the room was cleaned out and we were ready to go!

Adam was so helpful the entire trip! It really was the right decision to take him. He was sensitive to Sara and loved on her. He kept wanting to push her wheelchair, carry her bags, etc. Even at the airport I asked the two of them to stand and wait for us and I returned to find them holding hands. It melted my heart. Evan was very laid back and just went with the flow. It was a very difficult trip but could not have gone any better!

Shannon was able to get our flight home changed from Sunday night to Friday night, at no charge! What a blessing! It was so nice to have Sara laying in bed next to us in the hotel, sleeping peacefully. She and I woke at 6am Friday for her medicine and we went to breakfast together. The rest of the morning was a scramble to pack.

Again, Adam wanted to push Sara in the wheelchair when we left the hotel. As we were leaving, a boy and a girl were entering with their parents. We had been fighting with the kids over the balloons they had gotten. Of course they wanted to take them on the plane and we said no. Thankfully God sent children that we could bless and the kids enjoyed bringing a smile to someone else.

We made it thru the airport pretty well except for the TSA agent who thought Sara was in a wheelchair just for the convenience of hauling our stuff. Then he looked and saw weird plastic bags of fluid hanging from under her shirt. Oops.

We arrived home safely around 5:30. My neighbor had picked a few things up at the grocery store for us and left Michael's Italian Feast spaghetti, garlic bread, and a sub sandwich for us. The food was still warm so we were able to walk in the back door and sit right down to eat. What a huge gift! HUGE!

Sara was actually so exhausted she was in tears so she laid down on the couch without eating dinner. Five minutes later I checked on her and she was asleep. We let her rest for a few hours and then moved her to our bed so I could help her with medicine and going to the bathroom in the middle of the night.

Saturday morning I spent 1 1/2 hours taking the bags off her incisions--tape is not our friend! If you have a queasy stomach you may not want to look at the next few photos but I wanted to document what Sara has gone thru. This is what Sara flew home with to catch any drainage from her incisions. The second photo shows her actual incisions.

She still has tape residue covering her entire back. We work on it little by little when she can stand it.

Sara was so excited to get flowers from Grandma Sue and Grandpa!

I think Adam was feeling a little left out over the past week as he kept asking to be in photos, too. This is one of my new favorite photos of the kids together!

There are many people to thank for helping in various ways. The Palms for watching our kitty, parasites and all, as well as providing lunch on Saturday and just going above and beyond any time we need it. Tammi for taking care of Ivy so we didn't have to board her again, getting the mail, groceries, and warm dinner Friday night. She is a neighbor I want to keep all for myself! So many people were praying, more than I even know. Thank you!

Sara is back to school and feeling her normal self. I have had to yell at her out the kitchen window to stop running as she is supposed to have restricted activity for 2 weeks! I can't believe her strength--she is truly an overcomer! Not only did she not have any pain medication other than 2 doses of Tylenol because it hurt when she peed but she never complained or freaked out about anything. She had tubes hanging out of her back with bags of blood attached and rolled over from side to side like it was no big deal. She didn't panic when she went to the bathroom and it was bright red. She carries a spirit of peace and calm beyond her years. She teaches me things...I thought it was supposed to be the other way around.

Wednesday, August 19, 2015

Great Wednesday...and not so great

By the time the sun was just starting to come up this morning, Sara and I were both waking up. I needed to pump and nurses were coming in for vitals, emptying her bags, and then they were trying a blood draw again (which was successful on the first attempt). At 6:45am Dr. Granberg and Dr. Montgomery came in for morning rounds. The output in the bags from her stents was looking better and better in color, moving toward being more pinkish rather than red. The CT scan was ordered, as well as orders to remove her catheter. They want her to at least try to go to the bathroom every 2 hours. She may not be successful as so much urine is seeping thru the stents. I asked more about the tubes still hanging out from her incision points in her back. Those will be removed Thursday as part of her ureteroscopy procedure. They will continue to seep for a few days and we will need to change the dressing. But there will not be any stitches as the body will close on its own from the inside out within just a few days. Amazing how God designed the body!

I asked about fixing the reflux issue at the same time as the ureteroscopy on Thursday since it is the same side. Dr. Granberg felt that although Sara is a Grade IV out of V in severity, she is a mild IV and is a candidate for an injection thru the ureter of a chemical that will help the body tighten to correct the reflux, rather than a surgical procedure. She thinks we should leave it alone until she is proven to remain stone free for a period of time.

Sara is to be transported back to Methodist Hospital of May Clinic via ambulance by 7am Thursday morning.

The doctors left and I ordered us both breakfast (which, by the way, Sara and I both thought they totally skimped on portion size). We headed for the CT scan around 8. Shannon, Evan, and Adam arrived around 9:30 and everyone was all smiles. Evan was a very good boy for Dad. He woke around midnight for a small bottle and then slept in until around 7:30 for another small bottle. We talked for a bit and when Evan was ready for nap, I took Adam and Sara down to the play room for a while. Shannon brought the pack and play from the hotel so it worked out really well for Evan to have somewhere to sleep. Sara walked so fast down the hall to the play room that I had to briskly walk with her IV pole to keep up with her.

After an hour she was looking pretty tired so we walked back to her room. She went to the bathroom and rested a bit before lunch. The nurse made the mistake of flushing the gigantic whirlpool sounding toilet with the door open and woke Evan up so the boys and I went to the cafeteria for lunch while Shannon and Sara stayed in the room. She had asked if Grandma and Grandpa Mollenhauer could visit so they were on their way from Cedar Rapids. It was a 2 1/2 hour drive, so shorter than if they drove to visit us at home.

At 1:15 we headed to the atrium for the big event of the day for the entire floor--window washers dressed as super heroes were coming to wash the windows! The entire Child Life team wore super hero shirts and capes. They brought as many of the kids into the area as they could.

They let all the kids choose a free gift--Adam got a super hero baseball hat, Evan got superhero socks, and Sara got purple high heeled princess shoes! She was beyond excited as she has been wanting some high heeled shoes. I wouldn't let her walk in them but she wanted to enjoy them as she sat on the couch. They also each got a grab bag of goodies and decorated cookies.

All the staff still couldn't believe how much Sara was walking around. She definitely had times that she was tender but I know I could not have been as tolerant as she was, that's for sure! Everyone thought the super heroes were totally cool swinging back and forth outside, giving each other high fives before they came inside for photo ops.

Evan enjoyed the excitement, too!

Both Evan and Sara were pretty wiped out so we went back to the room for a nap while Adam went to the play room with Grandma and Grandpa. Evan went right to sleep. But even though Sara looked like she could fall over, she didn't nap. She kept telling me she was trying but wouldn't close her eyes and just wanted to go back to the playroom. At least she got some quiet time in bed.

Around 3 they emptied her bags again and she walked down to the play room. I found out later that she and Adam were playing a video game where they were racing each other on cows. She explained it in great detail and I wish I would have seen it! It is moments like that which reiterate why we decided to travel as a whole family.

At 4:15 Sara got settled back in her room, Evan woke up, and Adam came in with wet shorts because he didn't want to stop playing and waited too long to go to the bathroom. And Dr. Montgomery walked in. Normal chaos!

Dr. Montgomery had the results of the CT scan, which we were anxious to hear whether it was confirmed the right side was completely clear. That really was the only news we were expecting. He did confirm right away that the scan showed the right side completely stone free, which is exactly what we were hoping for! I tried to be excited but there was something about the tone of his voice that seemed like he had more to share. He started talking again about the plan for Thursday and that the tubes would be removed from the right once an x-ray image proved that there was good flow of urine from her kidney to her bladder. Then he explained the procedure to insert the scope into her left ureter to go up and use the laser to enlarge the access points. Still, there was caution and hesitation in his voice. I finally told him that it seemed like he had news to share that wasn't as good. And he said yes. The CT scan showed a very large stone, about 1.2cm, or just under 1/2". Okay. It was located in an area that was not easy to get to and the access is small. Okay but you are making it bigger with the laser, right? It is too large to fit thru the scope they are using as access thru the ureter. So she will not only require the ureteroscopy, which we expected, but the same percutaneous surgery as was performed on Tuesday would have to be redone on the left side. The alternative is to leave that stone alone and she comes back in a few years, and more stones would definitely form in the meantime, and we would try again.

I appreciate that never once while at Mayo Clinic, even for the short time we have dealt with them, have we heard "I don't know" or any sense of defeatist tone in their voice. They are providing their best medical opinion as to how we should move forward and it creates a level of trust. However, this isn't what we were expecting and it's hard. On Tuesday when we got the news that the right side went so well that they moved on to the left side, I teared up with joy because it felt like our prayers had been answered. We had walked into that day only aware of 2 forks in the road. We didn't know that a short time after heading down that road we would come to another fork and learn that the positive news of both surgeries in one day was only a semi colon in the story. And then after letting that news soak in for part of a day, there was yet another jog in the road to learn that not only will she need the "easier" scope surgery but to re-do the more difficult that had already been done once. It's really just alot to take in. But I am staying positive and faithful that God is still guiding us.

Shannon left with the boys and his parents to walk across the street for dinner. While they were gone Dr. Krambeck popped in and talked about tomorrow. She gave a very very broad overview with no details but filled me with confidence. Here is this pretty woman, joy in her face, with black dress pants and a silver leather jacket looking all classy and she looks me in the eyes and says "I am determined." I don't think she knows 100% how she is going to get to the end goal but she wants the goal and she is going after it.

Sara and I enjoyed take-out dinner together that Shannon brought us from their restaurant before the boys left for resting at the hotel. I had a long discussion with Sara's nurse about her gauze dressing on the left side and we worked on what we thought was the best plan to change it one more time and try to make it last all night so she could get good rest. It was nice to have a familiar face as she was our nurse last night, too. Sara enjoyed chatting with her and watching the Food Network channel. I did have a bit of a difficult time with Sara being in pain and requesting Tylenol. She is having some discomfort going to the bathroom and was sobbing. We did some breathing and I was able to calm her down. I tucked her in bed and enjoyed a shower myself before turning out her lights at 8:30.

The EMT crew is expected to arrive at 6:15 to take her back to Methodist to prep for her surgery. 5:30 is going to come early so I can pump before the room gets too crowded. There are so many scenarios with the surgeries tomorrow. If everything goes wonderfully accordingly to plan, it may take 3-4 hours. If she responds as well as she has so far, she will be released on Friday. All the doctors are still truly amazed that she is up and walking around as much as she is and has so little pain.

Please pray that tomorrow Dr. Krambeck's determination is seen to fruition, in whatever avenue she needs to take. And that Sara tolerates these additional forks in the road as well as she has so far. When I woke Tuesday morning I had the image of lifting my baby girl up to the heavens and it really feels like God has wrapped His arms around her.

Surgery day

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.

Lots of questions and people in and out of the room taking vitals. Because she would go from this building to another building for the tube placement and back to this building for surgery they were trying to coordinate various aspects of her care. They did one blood draw and were going to start the IV but then finally got word that they could just do that when they put her to sleep. We were supposed to watch a video about falling but that got interrupted as well.

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.

We received the next bit of news at 10:15--the tubes were place and they were transporting her back to Methodist Hospital to the surgical unit. Transporting in this instance simply meant wheeling her in her gurney from one building to another via staff only hallways. It took about 90 minutes to place the tubes into her kidneys but it went well. Surgery began at 10:50.

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.

Monday, August 17, 2015

Bone density and surgery schedule

Evan was up at 11:30 last night. Then Sara got up at 2:30am to go to the bathroom. She woke me up and said "What's dad doing?" Ummm...sleeping. "No, what was he doing last night?" I guess she was confused because Shannon had left to go to WalMart when she went to bed. Then Evan woke up at 5:30am and didn't want to go back to sleep. So the boys went down for breakfast at 6:15am while I got in the shower. By the time Sara and I got back from our turn at breakfast, Shannon was laying Evan down for a nap at 8:00! We all had some quiet time in the bedroom. The kids watched cartoons, colored, and drew pictures on Sara's light up tracing pad. I read over some of Adam's introduction to 1st Grade papers to become more familiar with his teacher.

We woke Evan at 11:00 so we could meet someone from the Child Life Team at St. Mary's Hospital for a tour of the pediatric floor. It was nice to see what a room would look like and where snacks were located. The kids were pretty excited about the play room. And Wednesday they are having super heroes rappele the building cleaning windows and paying the kids a visit!

Off to lunch in the cafeteria and then on to Sara's Bone Density test. First they took a few pictures of her lower abdomen. It was probably the best I have seen her kidney stones show up in one image in front of me. I should have taken a picture on my phone of the computer screen but they will post the image on our Mayo Patient website in a day or two. It is shocking and I have seen a lot of pictures of her stones. Then Sara had to lay still for 7 minutes while the camera moved over her taking a full body scan.

She did fantastic and the time passed quickly. It reminded me of a copy machine because that overhead gray piece had a glass on the bottom and something passed from left to right, back and forth, as it moved down her body and took images. I laughed as Sara's eyes followed it like she was watching a tennis match. As the scanner took pictures, it created a skeleton of her body on a computer screen, layer by layer, starting with her head. When it was done a full image of her skeleton was in front of me to look at and then the computer generated a rendering of the skeleton with skin on. She thought that was pretty cool! I did, too!

We caught up with the boys who were dropping off her 24 hour urine sample and prepaying for her surgery before heading back to the hotel for another nap for Evan. Shannon took Adam and Sara swimming while I spent an hour finishing payroll for work. After sleeping for 2 1/2 hours, I woke Evan at 5 so we could go to dinner. One tired boy! We wanted to go out for skillet cookie dessert but the big kids were having a very difficult day of listening and ran out of chances.

As I tucked Adam and Sara in bed we talked about what was going to happen tomorrow. She is older now and will remember more about her surgery. It was a little hard to hear her say, "After my surgery I will probably rest a few minutes in bed and then I can go down to the playroom, which will be fun!" I had to explain that it could be part of a day before she might feel up to it and she might be sore. I am just so thankful she doesn't have fear or anxiety at this point. Lights out without a peep from anyone tonight at 7:30!

I called in tonight for her surgery arrival time tomorrow--we are to arrive at Mayo Clinic at 6:15am! I am uncertain right now how long the pre-op process will be and when surgery is estimated to start. We are praying specifically for:

  1. The general logistics of the day and navigating that with Adam and Evan. 
  2. Smooth placement of the tubes directly into Sara's kidneys that offer the best possible access for removal of all the stones without injuring her kidneys or any other organs.
  3. Complete eradication of all stones in her kidneys.
  4. Further answers as to the makeup of the stones which could lead to insight about why they are forming.
  5. That the surgery on the first kidney would go so well that they can move forward with surgery on the second kidney under the same anesthesia.
I will update when we know more!

Sunday, August 16, 2015

Surgery Vacation

Only Sara would ask, "Mom when is our next vacation for surgery?"

The time has arrived. It has been a whirlwind of craziness over the past 2 1/2 weeks. It took us a few days to decide what combination of people were going on the trip for Sara's surgery. We decided to get the kids' input individually. Sara wanted Adam to go with. When I asked her why she responded, "Because I love him." How can we turn that down? Unfortunately, Adam said he didn't want to go on the trip and would prefer to stay home with the neighbor. He was concerned about missing the first day of school, being behind on homework, and not being able to meet new friends. As Shannon and I talked thru it we remembered Adam's influence during our Boston trip for Sara's first surgery. He was the only person who could make Sara smile when she was in so much pain. He made things normal for her. Even though they are not identical twins, we can't deny the bond that they have together. We sat Adam down and talked to him about sacrifice and sometimes we need to do something because it will benefit another person.

The final decision was that we were all going as a family together to support one another and we were going to fly there and back. At one point we considered driving to Minnesota and then someone flying home with Sara. Any way we looked at it, a long drive home with Evan when we were tired didn't sound appealing no matter who would have had that task.

The school was fabulous in working with us. Both Adam and Sara's teacher agreed to a private supply drop off and meet the teacher time because we would miss that. The kids were very excited to see their rooms, put their supplies away, sit in their desk, and chat with their teachers. I think it will really help them transition when we get back after missing the whole first week.

So many decisions to make--hotel (where we stayed last time was booked), how much to pack, are we taking car seats or renting them, are we taking the stroller or renting it...on and on and on. It was exhausting. As if that wasn't enough, Mayo Clinic called a week ago and said the prepayment for services they needed was $20,000. We do not have family insurance but instead participate in Samaritan Ministries, which is a Christian health cost sharing group. Therefore, we are considered self pay and it is Mayo Clinic's policy that we pay an estimate for services up front. Anyway, 2 days after that phone call I received a follow-up phone call that the amount was incorrect and instead it would be $58,000. Sure. After we figured out the details, I was ready to just give my debit card number but the bank refused to allow us to run that much thru our debit card even though the money was in our checking account. After a few hours of phone calls we had to just get a certified check.

Let's see...what other craziness happened? Sara was supposed to have a 24 hour urine test the week prior to her surgery. The end of Wednesday came and we still had no supplies for the test. I kept thinking the box would arrive on my back door but it didn't. I called Mayo Thursday morning and there was a mistake in the shipping department so they were overnighting the kit to arrive Friday. We would do the collection Saturday morning-Sunday morning and then have to fly with our biohazard sample. We checked with my friend who works for the TSA and she assured us it would be fine if we stowed it in our checked luggage. All was fine until Sara got up at 10:00pm Saturday night and urgently had to go to the bathroom but the little "hat" wasn't on the toilet. I went upstairs to see what the noise was and discovered she had a partial accident. Plus she had forgot and put toilet paper into the hat, then realized her mistake and pulled it out and put it in the toilet. So we have now contaminated the sample and absorbed some of the liquid, as well as lost some on the floor when all is supposed to be accounted for in a 24-hour period. I just sat on the side of the tub looking at the mess and wondering if we were going to have to do it over. Guess we will find out.

The next "you have got to be kidding me moment" was that I took our new kitten to the vet for a routine check up Saturday morning only to find out that she had parasites which required medication. I had to completely clean the litter box with bleach and check with the Palm Family whether they were still willing to watch her considering this new information. Thankfully they still took her in and I crossed another detail off the list.

*whew* that takes me up to this morning. The alarm went off at 5am after only 5 hours of sleep. We rolled, or maybe fell, out of bed and packed the last few things. I woke the big kids at 5:30 and Evan at 5:45 to nurse him before we left the house. Thankfully Adam and Sara got right up and weren't crabby at all as they put the clothes on we had laid out 2 days before. We left home 25 minutes later than we wanted to for breakfast at McDonald's but made up all that time because everyone ate so quickly. And, of course, Evan loved the pancakes! What a great start to the day.

Shannon dropped us at the front door with all the luggage.

Checking our bags was a breeze for our 8:45am flight. Until we made one crucial mistake. The one red bag. Why did we want to pay $25 to check that one? It clearly fits in the bin to gate check it so let's save the money! Then we go thru security and he opens the suitcase. It came back to us why we wanted to check it--it had our toiletry bag and Sara's urine sample inside. After having all our bags inspected, we waited for Shannon to walk back to the counter in his socks to pay the $25 so we didn't have all our liquids confiscated. Then he experienced his 2nd pat down. I guess he has an area on the side of his thigh that shows up on the scanner like he could be hiding something. Twice they discovered it was only his muscle! Weird.

The big kids loved the flight. Evan did great even though he was exhausted. We arrived in Minneapolis after the hour flight and I strapped him in the carrier in the back, thinking he would fall asleep resting on me as we walked thru the airport. No such luck. One tram to baggage claim. Another tram to car rental. Then we hit our next nightmare. Car seat rental. The woman brought us out a baby seat with a base for Evan because she said it was the only one she had that would go rear facing. That really is too small for him. Then she brought the next car seat for Adam. After Shannon read the label he realized that one would go rear facing and returned Evan's for one like that. He strapped one in the back and Sara sat in it. The shoulder straps weren't in the highest notch so he had to take it out to adjust it. That was the first time I decided to take the kids and go for a walk. After nearly an hour Evan finally fell asleep and Shannon finished getting the seats strapped in. The big kids really are too tall for theirs and they should have had boosters but we weren't sure if they had high back boosters and he wasn't about to take them out for a third time. Of course after only sleeping 10 minutes Evan woke up when we loaded him in the car and we decided we would stop for lunch before heading out of town. I think we finally left for Rochester around 1. Evan fussed for quite a while because he was so tired after giving up and napping for 40 minutes.

One positive--the stroller rental. Shannon found a place that rents all things you could possibly need for kids. The guy met him at the airport with the stroller, it was in great shape, very clean, and only $62 for the week. Money well spent. Next time we will get the car seats from him, too.

Adam, Evan, and I inspected the hotel while Shannon unloaded all the luggage and got it up to our room. Another nightmare. The room was quite nice. If it was just Shannon and I and one child. It didn't have a full size refrigerator, the living room was nice but way too crowded to have the couch pulled into a sleeper all week. We both agreed the hotel we stayed in a few weeks ago was so much nicer. But it was booked and he had called twice. There was one hotel across the street from the hospital Sara would be at. We called there and booked a room. We hung up the phone and decided to try one last time to see if the hotel we stayed at on our previous trip had a cancellation. They did! We couldn't believe it! It was something familiar, had better amenities, and we would pay $99 per night instead of $150 where we just made our second booking. It was just around the corner so Sara, Evan, and I walked there while Adam and Shannon brought the mini van with the luggage. On the way Sara and I took a moment to say "thank you, God!" Even with all the craziness of the day, we stayed patient with each other and God was going before us working out even the smallest of details.

We had to wait in the lobby a bit for the room to get cleaned. Once in the room, we took some time to get set up for bedtime later and unpack our things. At 4:15 we walked to a nearby restaurant knowing all the kids would need an early bedtime. Evan was so exhausted that I ended up walking him around the parking lot while Shannon and the kids ordered. It didn't take long for him to pass out for a 20 minute cat nap.

We got back to the hotel and got all the kids ready for bed. Of course Evan was so wired from exhaustion he wanted no part of sleeping at 6:30. Shannon left to return to the restaurant for the leftovers we forgot and head to WalMart for supplies. It took me an hour to get Evan relaxed enough to even lay down in the pack and play.

Here's to an uneventful day tomorrow. Sara has a bone density test in the afternoon and we are going to meet with the Child Life Department for a tour of the hospital area.

I pass up moments like this all too often but in the craziness of the day, I didn't miss it. I have been married to this man for 18 years. We have been thru so many defining moments in our marriage that many would not have survived one--from building our own home to unemployment to infertility to NICU to financial struggles to years of medical issues with our children. Our every day life right now is a rollercoaster ride of white-knuckling it to hang on for dear life. We argue. We don't believe the best in each other. We don't forgive easily. We seem to fight to have to be right. But here we are. Hand in hand and walking the journey together. Still. Thru it all he has still been there to love us, protect us, provide for us. He is a wonderful father. I never treat him as he deserves. But I pray that this memory stays with me and I can start a new journey of treating him as the man God has made him to be.

Saturday, August 1, 2015

Still a medical mystery

We met with Dr. Sas at 3pm last Tuesday and then finally headed for home after a very long week. All the kids did really fabulous being flexible and off schedule. I was so proud of their behavior. Even Evan wasn't fussy when he snuck in cat naps when he could.

There was a small changing area in the corner of the room that closed off with a curtain. Adam and Sara hid back there before he came in and I heard Sara say "Don't jump out, just say 'Boo!'" Adam started the conversation by telling the doctor "We were going to bring you a Cinnabon but we ate it!" I love that here we were at Mayo Clinic and the kids were just their normal selves making the doctor laugh.

Dr. Sas led off by telling us that he has "no unifying diagnosis" yet. That means her symptoms, lab results, etc., do not fall within any of the defined unique/rare causes for kidney stones. The closest we came a few months ago was thinking it was a genetic issue with her calcium receptor channel that was sending too much calcium to her kidneys. Dr. Sas does not believe that is the issue.

He did have 4 items to note. Some are small abnormalities but he wants to pay attention to everything that is odd, no matter how small.

First and most noticeable, Sara has Hypercalciuria. That means that her urine is excreting abnormally high levels of calcium. She started taking Diuril in March for the calcium that was elevated but tests at Mayo showed it has not helped at all. Therefore, he tripled her dose and will recheck her 24 hour urine test levels the week prior to surgery. We also have to take her next week for bloodwork to check all of her electrolyte levels to see if the increased dosage has thrown anything else in her body off. Sara has had 4 24 hour urine tests now and he pointed out that her calcium levels in her urine have increased in every one, whereas most children it decreases as they get older.

Second, Sara's phospherus in her blood was a little low but the phospherus in her urine was normal. He would expect those levels to line up. If it was low in the blood, then it should be low in the urine because the body would excrete it at the same level.

Third, Sara's magnesium in her urine was twice the normal level but the magnesium in her blood fell within the low end of the normal range. Again, if it was so high in the urine, he would expect it to be high in the blood.

He isn't sure what that means just yet but is just careful to go thru all abnormalities in great detail.

Fourth, Sara has elevated retinol binding protein in her urine. That is a marker for proximal tubular dysfunction. The number is not thru the roof so some diseases can be ruled out.

Sara would benefit from a broad genetic test, which has not been developed yet but Mayo is very, very close. They are currently talking to donors about raising research funds to complete the development.

When we come back for her surgery, he wants a bone density test and for us to talk to his unique kidney stone registry team. They will take a sample of her blood (and a stone sample from surgery) and put it in a "bio bank". When new tests become available, they will pull her sample and run it without having to contact us for samples every time.

We left with 3 directions:
1. She is to have 1 1/2L of fluid every day. That is a lot for a 6 year old to take in...especially one who is stubborn sometimes. Some days it is exhausting staying after her. I have been talking to her about how she needs to take some responsibility with her water. She is so young to teach these things but I don't have a choice when I am not around her every minute of the day.

2. We need to limit her sodium intake to 1200mg per day. Dr. Sas isn't sure if this will make any difference but he wants to see. I have been tracking her food thru an app and am aiming for 350mg per meal and 150mg for snacks and treats outside meals.

3. As mentioned earlier, he increased the dosage of her Diuril from 1.25mL once a day to 2mL twice a day. It can cause an urgency to go to the bathroom. I have heard her rushing to the bathroom in the middle of the night a few times but so far she has made it!

While we don't have answers yet, we walked away from this week full of hope. No one at Mayo threw up their hands and said they didn't know what to do. We never felt rushed in our communication. There were multiple days that Dr. Sas called us personally or we dialogued via email.

This is where we are supposed to be!