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.

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