On December 15 Sarah had her renal ultrasound and VCUG. We had to wake her up at 6:30 which wasn't great, but she got moving quickly. She wanted to leave on her pajamas which worked just fine. We got to the radiology department at the hospital at 7:30. My parents met us there which was very kind. We didn't have to wait long which I was thankful for. Sarah, Robert, and I went back to a small, dark room for the ultrasound. She wasn't a huge fan, but she cooperated and stayed pretty quiet. The ultrasound tech was nice and worked pretty quickly. He checked out her bladder and kidneys and only took about five minutes. When he was finished we waited in a different waiting room. Sarah wanted my mom to come back and join us. Shocking. ;) They're two peas in a pod!
The room for the VCUG was much larger. We'd been in it a year and a half ago, so I knew what to expect. There were two radiology techs that got the area ready. They had Sarah change into a hospital gown and gave her a doll that also had a hospital gown. She got to take it home which was sweet. Then a pediatric nurse came in and placed the catheter and emptied her bladder. The placement of the catheter wasn't fun but not horrific. She's had a catheter six times so it's sort of familiar. My mom, Robert, and I were able to hold her hands and stay close to her face to talk and reassure here. They lowered the x-ray machine, and her torso was basically in a tunnel. Then the radiologist came in, and they started pushing the contrast dye. That part was a bit uncomfortable, as you can imagine. The radiologist watched a live feed of the x-ray, and we could see the monitor as well. He watched her ureters and kidneys as her bladder filled, and the instant the contrast dye started up her left ureter started refluxing. I was immediately disappointed. Honestly, I had been hoping and praying so hard for 18 months that I just thought surely something would have improved. I knew there weren't great odds, but I just had such high hopes. After seeing the reflux I just switched my focus to soothing Sarah and cheering her on. The left ureter continued to reflux, and then the right one started up two. Both backed up into her kidneys. The left ureter is just as misshapen as before.
So then they pulled out the catheter and needed her to pee to watch the reflux as her bladder emptied. When she'd had the last test at 7 months old they just removed the catheter and she immediately started peeing, but since she's potty trained now I knew it wouldn't be that easy. We'd talked about it beforehand. "Sarah, the doctor is going to ask you to do a funny thing. He's going to ask you to pee on the bed, and it's okay to do it this one time even though it seems strange." She'd told people for days that she was going to pee on a bed, but unsurprisingly, when the moment came she wouldn't do it. I really do understand. I mean, I wouldn't want to pee on myself and then lay in it on a bed. So she got squirmy and was crying because she had a super full bladder but didn't want to pee on the bed. The kind nurses brought out a pink bedpan and called it a princess potty. They held it under her, and she peed immediately. I'm not sure why they didn't offer it to begin with, but at least it worked once it was offered. She peed, and the radiologist noted that she continued to reflux as her bladder emptied.
Once she peed we got to clean her up and get dressed. She got sent home with a diaper for her baby and lots of band-aids. We went to Chick-Fil-A to let her celebrate her bravery.
As a reminder, or maybe just for your information in case you haven't become a novice urologist over the last year a half (haha), when a healthy person is processing urine, it goes from the kidneys, to the ureters, to the bladder, and out of your body through the urethra. Sarah's goes to the bladder but then goes back up the ureters and into the kidneys while your bladder fills up. Then when she pees some urine also goes up into the kidneys. The urologist likened the urine being back in the kidneys to being like a pond with stagnate water or a pool without any chlorine. So obviously, that's a prime environment for an infection to occur. So that's how Sarah gets UTI's. It has nothing to do with external factors like wiping wrong, sitting in diaper, or peeing in the bath tub (as some people have tried to suggest to me. Uh, thanks?) The last year and a half she's been on a medicine that doesn't prevent reflux (no medicine can), so her body has been refluxing, but the medicine has been preventing infections.
Anyway, we went home happy that Sarah had been so brave and didn't seem to be permanently traumatized from the day but also fairly disappointed that we didn't have better initial results.
Three days later on Monday, December 18 we saw the pediatric urology nurse practitioner. Springfield doesn't have a pediatric urologist so a team comes down from the St. Louis Children's Hospital once a month. From my understanding, the doctor comes down to do outpatient procedures, and the nurse takes the office visits. So we've seen nurse practitioner Mary both times now. She confirmed what we suspected - grade III for her right and grade IV for her left - just like a year and a half ago. She said we could continue to give Sarah her medicine and wait another 12-18 months, but things most likely wouldn't have changed. She kind of beat around the bush for a bit while I asked her questions like, "How likely is it that she'll improve?" and, "How long do people usually try to wait it out?" Finally I just asked her, "What would you do if Sarah was your daughter?" She was finally straightforward and said she'd have the surgery. As a reminder, for kids with lower grade reflux like a I you often outgrow it. Grade II can be fixed through a laparoscopic outpatient procedure called deflux. But grades IV and V have to be fixed with a procedure called open anti-reflux surgery. She asked if I'd like the doctor to call me later that day, and I said yes. At the end, they had Sarah pee on a super high-tech toilet that observed her peeing and printed out a receipt with a graph showing her flow and information about her duration, quantity, and peaks. Crazy and super cool!
The doctor called me a couple of hours later. I was very thankful that he took time to call me and answer my questions because I know not all doctors do that. The synopsis of the phone call is that he doesn't believe that Sarah will get better on her own, and that surgery is necessary and the only way to resolve her issue. Robert and I feel very confident that this is the right decision for Sarah's health. The doctor says this surgery is the gold standard for fixing VUR, and that it was a 98-99% success rate with a very low morbidity rate.
So here's what else I learned from the doctor. The surgery will be at the St. Louis Children's Hospital on January 25. We will go up the day before so that we can get settled and not have to make the 3.5 hour drive the same day as the surgery. They schedule surgery in age order, so Sarah should be toward the start of the day, but we'll get the exact time the day before the surgery. We get to be with Sarah while she gets her catheter, and then they'll take her back for the TWO HOUR surgery. Does that seem long to anybody else? After the surgery, the second she wakes up Robert and I get to go back and join her. She will spend the night in the hospital and will have in the catheter overnight. I'd imagine she'll also have an IV overnight, too, but I forgot to ask. I'm also thinking that if she has a catheter and an IV then they won't want her walking. How do they keep a two year old from walking? Will she be heavily medicated? I should have asked more questions! They need Robert and me to spend the night in her room with her on a little pull out bed. We're already bracing ourselves for a very long night with little sleep. In the morning they will remove the catheter, and they will need her to go to the bathroom. Then we'll get discharged. The doctor said patients usually stay 24-36 hours after surgery. I'm curious to see how miserable the drive home is. The incision will be like a c-section incision, so I can't imagine riding in the car in a carseat is super comfortable. He also said that Sarah's left kidney is 15% smaller than her right kidney which is pretty common for people with reflux. Her kidneys aren't scarred at all, and both are growing proportionately, so he feels comfortable saying this is just a birth defect. He also said that Sarah's bladder is the size of an adult's which is also common for kids with reflux. That really makes sense because I've always thought it's impressive that Sarah can hold her bladder for six hours from time to time.
The doctor says she should be back to her normal self in a week and to expect blood in her urine for about four days. The reason for that is because for the surgery he cuts open her bladder, removes the ureters from it, straightens them, and reattaches them in a stronger position. He will close the incision with stitches and glue. I need to ask, but I'm not sure if the follow-up will be in St. Louis or if we can do it when his team comes down to Springfield.
Anyway, here's our current mindset: We feel confident that this is necessary and the right decision for Sarah even though we wish this wasn't our reality. We feel confident that this is the right doctor to do the procedure. St. Louis Children's is a great hospital, and he's one of only 150 people in the country with his certifications. We're sad that our daughter will have to go through being scared and being in physical pain. We're sad that she'll have a large scar on her beautiful skin. We're thankful for modern medicine that can prevent her from needing a kidney transplant. We're thankful for family members who are supporting us and sharing this burden. But I'd imagine that we're as nervous as just about anyone would be who has a two year old about to have a two hour surgery and an overnight stay in a hospital.
We would greatly appreciate your prayers. We're praying that God would use this surgery to heal Sarah and to help her lead a healthy life, that He would keep her safe through the surgery and recovery, that God will calm our anxious hearts as we anticipate the surgery and wait through the actual procedure itself, that God would use this part of our story to bring Himself glory, and that we could be witnesses to all we encounter because of this situation.
Would you join us in doing the same?
I am joining you in prayer for a successful surgery. Sarah is a little angel, so precious. Thanks for sharing, Amy. Big hug. Sally Helwig
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