Saturday, August 4, 2012

Sara's kidneys

Sara had a urinary infection last fall. The pediatrician told us that he would monitor her but if she had another one he would need to send her for further testing.

On July 18, I trusted my gut and showed up at the pediatrician's office when they opened without an appointment. Turned out I was right. The quick test revealed blood in her urine and white cells. Our regular doctor was not there that day so we saw Dr. Harvey. She indicated she was very concerned and felt like we needed to do some follow up testing right away. Toddlers don't typically get urinary infections. It could be nothing or it could be something that leads to kidney failure. They coordinated with the hospital to schedule an ultrasound of Sara's kidneys, as well as a voiding cystourethrogram (VCUG). The VCUG is a procedure where they insert a catheter into her urethra and fill her bladder with a liquid contrast and then take x-rays throughout the process. They are looking for reflux, or the flow of urine back up into the ureter, or possibly into the kidneys.

After making the appointment for the procedures, Shannon and I began to feel that we should opt for sedation which would make Sara loopy and help erase her memory of the experience, which could be traumatizing. So we rescheduled the appointment for yesterday.

Sara did fantastic for the ultrasound. She laid very still for the long list of photos the technician had to capture for each kidney. I started feeling like something was wrong, though, when I noticed she kept taking extra photos of some white spots (some were white lines) and then measuring them. I chose not to ask the technician because I figured she couldn't tell me anyway.

After the ultrasound we walked down to a little room where Sara got her own big bed and started meeting some new people. I think she was a little overwhelmed by the process but I had already talked to her about what was going to happen. The sedation nurse (Mary) took some vitals, the doctor came in to verify the dose, and a Child Life Specialist stopped in at our request. She had a bear that she used to explain to Sara where her bladder was and that they were going to put a straw where she goes potty, take some pictures, and then she would need to go potty in a travel potty on the bed. We read some books together, and she thought it was pretty neat that they wrapped a bandaid around her finger and turned out the lights so she could see it glowing red (to measure her pulse ox). Finally it was time for the liquid sedation. We waited and waited. Just when the nurse said she might have to give her more Sara finally said she felt dizzy. They transferred her to a transport bed and off we all went down the hall to x-ray.

They showed her all the cool fish hanging from the ceiling and changed her out of her dress and into a hospital gown. The Child Life Specialist got out her iPad and loaded an alphabet game and held it on Sara's chest for a distraction. The nurse kept warning us that even though Sara was sedated, she would probably still fuss when the catheter went in because it would be uncomfortable. They were working on getting Shannon's and my x-ray vest on when we heard the nurse say "You're done already?" They had the catheter in and Sara didn't even react! She did such an awesome job for the test and just enjoyed her iPad game. We could see her bladder filling with liquid. When it came time to pee in the bed pan, she wasn't interested and just kept playing her game. The x-ray tech said that was okay because he could already see the reflux on the screen and pointed it out to us. She went potty on the toilet, they took a few more pictures, got her dressed, and we went back to the room to wait for some of the sedation to wear off. Everyone in the room kept saying again and again how smooth everything went and it was the best procedure they can remember having. So proud of my little girl!

While we were waiting, Mary got a phone call and the doctor told her he was making arrangements for us to be seen by a pediatric urologist a few hours later, Dr. Rhee. That was another indication that the news wasn't positive. Still a little woozy from the sedation, they released us and we met Shannon's parents and Adam for lunch. Sara was quite upset that we were going for lunch and insisted that she have breakfast. I think it was because she hadn't had breakfast that day and her memory was off as to what time it was. So we picked Bob Evans so she could have the waffle she requested.

It was a little surreal being at Dr. Rhee's office. I don't know what I was expecting but to see a room full of children, most older than Sara, who needed his specialized services was a reminder that there is a whole world that people live thru and we go about our day not even realizing that it exists. Kind of like when we were in the NICU.

The first thing Dr. Rhee discussed with us was the reflux. They grade the severity on a scale of 1-5, with 5 being the worst. He has rated Sara's reflux as a grade 4. Because of her age, he prefers to monitor it for 1-2 years to see if it will correct itself. If it doesn't, it would require surgery. Each infection that the kidney suffers becomes more and more serious. After the 1st infection, no damage, after the 2nd infection (which this was), minimal damage, after the 3rd infection, severe damage. So the goal is to avoid any further infections. This is a time of rapid growth for Sara and he doesn't want anything to happen that would impede her kidney growth and function. She will be on a daily low dose of antibiotics until further notice. The first kind he chose would be completely expelled by the body and there would be a minimal chance of building up an immunity to it. I asked what the long-term effects are of being on an antibiotic and he said "better than kidney failure." I was very in favor of that until the pharmacy told me about the $460/month price tag! So we switched to something that she was on most recently which is $50 for a 14 day supply. He also wants to see her back in 3 months for another ultrasound and then she will have another VCUG in 1 year to check on the progress.

The second thing Dr. Rhee discussed was that she has severe calcium deposits on her kidneys - kidney stones. Those were the white spots I saw the ultrasound tech taking pictures of and measuring. They may have been caused by the diuretics possibly given in the NICU to help her kidneys function. I will probably check in with her NICU doctors to even see if it is true that they gave her this kind of medication. The kidney stones may be contributing to the reflux. It is a little difficult to view some of the photos of the kidneys because there are so many stones blocking the image. Sara has absolutely no pain from these. Dr. Rhee is referring us to a pediatric nephrologist to see if they can tell us what may have caused them and if there is anything we can do about them. He wants that appointment in the next 1-2 weeks. Apparently they could be embedded in the deep tissue of the kidneys and be very hard to remove. Also, because she is a twin, he is suggesting that Adam gets an ultrasound to see if he might have kidney stones, as well.

I'm not sure what I was expecting to come from Sara's procedures - I think I was just waiting to see the results rather than playing a what if game. This is certainly a path I didn't think we would be traveling. At this point, I have more questions that need answers and phone calls to the pediatrician to keep them informed, schedule the appointment with the nephrologist, call the NICU, and possibly schedule Adam's ultrasound.

I'm still processing all the emotions. I've been careful to stay very positive for Sara so as not to scare her and we are intentional about not discussing it in front of her.

In the meantime, we'll pray for complete healing.


Heather said...

Oh, JoLynn. I'm so sorry that you're going to have to go through this waiting game. We will certainly be praying for complete healing.

Jenny said...

So sorry to hear about Sara! Owen goes to the same ped urologist, although we see Dr Reid. Please keep us updated. I know it is just a big waiting game with kidneys....we are in the same boat with O's.