VCUG

We went back to see the urologist today, and Kaitlyn had a follow-up VCUG. This was the final test to see if the surgery was successful. The study showed that she did not have any reflux back into her kidneys.  Thank you, Jesus!!! 

These are the comparing X-rays.

Before surgery. (The dark line on the right side of the picture, is the contrast that they injected. You can see that as her bladder empties, a large amount of urine goes back up the ureter into her kidney.) 

After surgery, at the same point in the imaging study. No evidence of reflux is seen.

Again, we are so thankful that the surgery was successful.  She does have a significant amount of scaring on that left side, but her kidney function with both of them is very good. To God be all the glory!

Follow up ultrasound

Kaitlyn had her follow up ultrasound in Bismarck yesterday.  She did really well and was very patient with the process.  She did about talk the leg off of the radiology tech, though.

Natalie and I entertained ourselves with selfies and playing on my phone until she was done.

Waiting... waiting... waiting...

We ate lunch at Famous Dave's before we left town. Natalie didn't make it far into our meal, though.

She livened up a bit after the food came.

We brought some of the animals from the zoo with us, too!

The ultrasound results were unchanged from her previous scan, which means she has not had any more scaring on her kidneys.  They will do another VCUG in a couple of months to make sure she is no longer having reflux. The urologist wanted to make sure that swelling was completely gone before we attempted it. We are praying that the surgery fixed the issue and she won't have any further kidney damage once she comes off of her antibiotics.

Kaitlyn's Surgery in Bismarck

We headed to Bismarck on Wednesday night for Kaitlyn's surgery on Thursday. We went out for dinner at a local Mexican restaurant before heading to the Ronald McDonald house for the night.

Thursday morning, Uncle Jesse, Aunt Ruth, Jessica, and Granny come down and met us at the Ronald McDonald house. We visited in the living room for a while and had prayer with her before leaving for the hospital. They also gave her gifts.

She got a new doll (with accessories) to keep her company in the hospital. She loves it!

Aunt Ruth and Jessica are off to spend a couple of days together in Minnesota.

Getting checked in to her room.  She took her special bear.

Waiting in the pre-surgery waiting room.  She started getting really scared and tearful, so we cuddled in the recliner until they called her back.

Out of surgery and in PACU. She woke up scared and in pain. Thankfully, I could be back there with her when she was waking up. Dr. K said that the surgery went very well.  He had to do the procedure a little differently than planned, but felt like she would make a complete recovery, and would no longer have ureteral reflux once she healed completely.  She would have to have a catheter for at least 24 hours because of the swelling.

After pain medicine, she was able to sleep for a little bit. She started having bladder spasms, and they couldn't get her pain under control, so we tried a couple of different medications.  She ended up being in recovery for over 3 hours.

Back in her room. Trying to smile and be happy, but feeling really tired and emotional.

The hospital goody bag from Daddy and Mommy to help her recover, and keep her activity at a minimum.

The first night was pretty rough.  She did not like the catheter, she was very nauseous and kept throwing up, and we had a difficult time keeping her pain under control. Jim and Misty came down with the kids to visit. Natalie stayed with them while we were in Bismarck, so she got to come too. Kaitlyn was happy they came, but had a hard time staying awake and being social.  Poor girl, she felt rotten!

Finally resting after getting her bladder spasms and nausea under control. 

Friday was a little better.  As long as we kept on top of her nausea med and pain meds, she did pretty good. She had to take frequent naps, but at least we got some smiles! She was happy because she got her catheter out, but that meant she had to actually get out of bed to go to the bathroom about every 20 minutes for a while.  She wanted me to carry her, but my back just wasn't up for the task. We got a bedside commode which made things much easier.  The activity of just getting in and out of bed took a lot out of her, but she was a trooper.  We even put a puzzle together.

She was so excited to get visitors! Shawna and the girls came down to visit and brought her more fun stuff to do in bed.  They even brought some treats for me!

Katie with her doll.  She spent a lot of time just dressing her and playing with her cool glasses.

Charlie and Jendi Sefcik and their kids came to visit as well.  They brought Kaitlyn balloons and candy, and they brought me dinner from Qdoba. It was so sweet, and such a nice change from the hospital food!
She got up to the chair for the first time right before they came.  She was in quite a bit of pain, but tried to tough it out and be social.  

By Friday night, she was no longer nauseous, and was keeping fluids down.  She even tried to eat a little bit of solid food. She had decided she didn't want to use the bedside commode  anymore, and wanted to make it to the bathroom. She is one determined girl. She slept pretty well that night, except for the trips to the bathroom every couple of hours. Those turned out to be a bit of an escapade. She tried to do most of the work herself though!

On Saturday morning, she was a completely different girl. She had heard that she could go home if she was doing well enough.  She decided she wanted to take her doll for a walk down the hall. She made it a whole lap around the unit. She even pushed her own IV pole for most of it. By the time we got back she was tired and needed to lay down, but was insisting she was feeling well enough to go home.

We got discharged that afternoon. She didn't want to take the wheelchair either, she insisted she wanted to walk.

So proud of my tough little girl!

She wanted a picture with the big Sanford Children's bear.

Downstairs waiting for her meds to be filled in the pharmacy.  I was so glad to be heading home.  It had been a long couple of days with very little sleep.

We met up with Robert, Danyel, and Owen for lunch since they were in Bismarck too.

We are so thankful for all of the prayers for Kaitlyn, and the expressions of love from all of our family and friends.  God definitely touched her, and she is recovering very quickly!

Urology Update

On Wednesday, we took Kaitlyn to meet with the pediatric urologist in Bismarck. The original thought was, that we would attempt the Deflux procedure, keep her on her daily antibiotics, repeat the VCUG in a few weeks post-procedure, and see if it worked.  Dr. K said that he would be happy to try Deflux, but told me that it was unlikely to work with Grade IV reflux, and he has seen so many patients come back after the procedure, he only recommends it in children with Grades I and II.  To be honest, I half expected this response, as her doctor in Oregon felt much the same way.  Since it is fairly low risk, and there is no surgery involved, he left the option up to us to try. He was very hopeful that it would work on the right side, as she only has Grade I reflux at this time.

The next option would be robotics.  This procedure would require 4 laparoscopic sites or "puncture holes", a guided robot does the surgery, and the healing time is a little faster, but there are some added risks.  The procedure is still so new, that the success rate is fairly high so far, but there is really no way to see the long-term effects because the procedure has only been around 4-5 years.

The last option would be a complete ureteral reimplantation. It would be an open procedure, the surgery would be a couple of hours long, the healing time is longer, but the success rate is 98%. I felt like he might be pushing me toward robotics, as he is the one that does all of them for the area, and it is less invasive. I finally asked him, "If this was your daughter, what would you do?". He said, definitely the open complete reimplant. He said if robotics wasn't successful, she would be back getting the full surgery anyway, and there was just not enough data at this point for him to know what the long-term success of it would be. That was good enough to persuade me to do the complete surgery. He also said, that since he is going in anyway, he will do it bilaterally (on both sides). The probability is high that she would eventually develop worse reflux on the right, and we would be back in to do another complete surgery, therefore causing even more scar tissue to develop, and increasing the risks for complications later. She will have to have a VCUG every year for a while, to make sure there are no issues, but she will be able to come off of her daily antibiotics right away. She will have to be in the hospital for 3-4 days, and the healing time is longer. While I feel bad about that side of it, I do feel like we are making the best decision for long-term success. Her surgery is scheduled for August 6th.

We are so thankful for all of the prayers on her behalf, and would ask for them to continue. Pray that God will guide the doctor doing the surgery and the staff caring for her. Also, pray that she will have strength to go through it, and a swift recovery with no complications.

(To read previous posts related to this, click on "Kaitlyn's Kidneys" under "Tags" on the sidebar)

Urology consult

We took Kaitlyn in for her urology consult on Monday with Dr. O.  Because of her age, and the grade of her VUR (vesicoureteral reflux) being III-IV, he feels strongly that her reflux will not go away on its own, and will most likely get worse.  The risk of not treating it is kidney scarring and permanent damage.  He put her on a low dose, prophylactic antibiotic, to prevent her from getting an infection in her kidney.  He wants her to get a scan done in nuclear medicine to check for extensive scarring.

His recommendation for treatment of the VUR, is to do Deflux.

Deflux is a gel that is injected around the ureteral opening.  It is a tissue bulking agent (kind of like a silicone material), that prevents urine from flowing back up the ureters.  The great thing about Deflux is that it is minimally invasive, can be done as an outpatient procedure, and has been proven to be very effective in children with VUR grades II-IV.  After the procedure, she is closely monitored for 6 months to a year, to see if the procedure was effective. If Deflux is not effective, she will have to have a complete ureteral reimplantation.  That surgery consists of changing the way the abnormally positioned ureter connects to the bladder, by creating a new tunnel into the bladder. 

(Normally, the ureter connects to the bladder, which is made out of muscle, in such a way that urine is allowed to enter the bladder, but not allowed to back up to the kidney. When the ureter enters the bladder abnormally, the valve formed by the ureter pressing against the bladder wall does not close properly, so urine refluxes from the bladder to the ureter and eventually to the kidney.) Clear as mud, I know.
Since we are moving soon, Dr. O thought we should get all of the scans and prep work done here, so that the new urologist will know exactly what is going on.  He feels that the person doing the follow up should be doing the procedures.  We are hoping and praying that the antibiotics that she is on will be effective enough that she won't have any more pyelonephritis until she can get the Deflux procedure.  We are also praying that we will find a really good pediatric urologist in North Dakota.

VCUG results

Today was Kaitlyn's appointment for her renal (kidney) ultrasound and VCUG.  She did really well.  They wanted to do a little sedation, so she couldn't eat or drink for about 4 hours prior to the procedure.  She did great with her ultrasound, and as far as the tech could tell, there were no major anatomical defects, and the vasculature looks good.

She then went for the VCUG.  In this procedure, a catheter is inserted into her bladder, contrast is flushed through the catheter to fill the bladder, then multiple x-rays are taken while she voids, to see if the fluid refluxes back up to her kidneys or is eliminated properly.

She was such a trooper.  The whole catheter placement and procedure was very unpleasant, but she did great!  Unfortunately, the test showed that she does have reflux.

Vesicoureteral Reflux is graded from 1-5.  1 being very minimal, and 5 being very severe.  Her reflux is somewhere between 3-4 on the left side.

She goes to see the pediatric urologist next Monday to find out what the next step is.  I'm hoping and praying that it can be managed with constant prophylactic antibiotics, but we will see.  At the very minimum, she will probably have to have yearly VCUGs to check the status of her reflux.  The most important thing is to not have kidney damage from it.  I thank God that she hasn't had more bouts of pyelonephritis with her reflux being so severe.

I called Anthony when we were on our way home.  I was a little upset over the fact that we are moving soon, and all of this is coming up.   He reminded me that this didn't come as a surprise to God, and he is going to work everything out.  He always does! 

 As much as I love Kaitlyn, I'm so thankful to serve a God that cares more about my little girl than I ever could.  She's in good hands.  This I have confidence in and peace about!

Pyelonephritis....again!

I thought the flu was hitting our house.  Kaitlyn started throwing up on Monday, and running high fevers (up to about 105*f).   We treated it with the usual regimen.... alternating Ibuprofen and Tylenol, activated charcoal, probiotics, Zofran, and tried to push the gatorade and fluids.  While doing all of this, I was not feeling so great, so I was convinced it was the flu.  I started feeling better really soon, but she didn't.  

(She slept on the well-protected couch downstairs, to be close to our room and the bathroom.)

By day 4, I was starting to get de ja vu of last February.  I made a doctor appointment for her and asked them to check her urine.  Poor girl, when the fevers hit, she is just miserable.  She just gets so pale and lethargic, and cannot quit vomiting.

 

 My suspicions were confirmed.... pyelonephritis again.  They gave her an IM antibiotic and sent her home on oral antibiotics.  She started feeling a little better that night.  Thank you, Jesus!  They had us come back the next day, but felt like she was doing well enough to not do another IM antibiotic, and just wait for the urine cultures to come back.  She still ran low-grade fevers and threw up a couple more times, but was slowly getting better.  

After the 5th day of the oral antibiotics, the culture and sensitivities grew back on her urine, and showed that the antibiotic she was on was not effective on the type of bacteria that was growing.  We started a new antibiotic, and she hasn't ran any more fevers or thrown up.

It felt like we had our own little pharmacy on our kitchen counter.  I finally had to start making a list of what she had taken, and when.  I couldn't keep up with it all anymore.

Since this was her 2nd bout of raging pyelonephritis, the doctors feel it is important to get the pediatric urologist involved, and do some testing.  She goes in next week for an ultrasound of her kidneys and a VCUG (a test performed using a catheter, contrast [dye], and imaging, to see if she is having urine reflux back into her kidneys).  We are praying, of course, that everything is normal with her anatomy, and that there is no reflux.  This is one of those tests that I have prepped parents and patients for many of times, yet never imagined that my own child would be having one.

Kaitlyn's Hospital Adventure

Kaitlyn got really sick, and ended up spending a couple of nights in the hospital. 

She had gotten the stomach flu in the middle of January, and got better after just a couple of days.  Then, a couple of weeks ago, she started running fevers and having stomach aches again.  The fevers went away after a day or two, so we thought she had caught another stomach bug.

On Tuesday, when I got home from work, her temperature was 103*, she had a stomach ache, was pale and lethargic, and could hardly stand up on her own.  I decided it was time to take her to the Children's ED at Randall.  It was starting to snow really hard, so Papa and Granny offered to drive us.  

(Febrile and feeling awful in the ED)

After an x-ray and a series of lab tests, they discovered that she had Pyelonephritis (a kidney infection).  She was really dehydrated after vomiting repeatedly, so they gave her a couple of boluses of IV fluids, and a dose of IV antibiotics.  She looked much better after her fever came down, and she was starting to drink some fluids, so they decided to send her home on oral antibiotics.

Then, right before they took her IV out, she spiked another high fever (almost 105*), and she started vomiting again.  By this time, her WBC count came back pretty high (21.6 for my nursing friends).  They decided to admit her overnight for IV fluids, and to give her more IV antibiotics.

She seemed to do really well as long as she didn't have a fever.  As soon as she spiked, she started vomiting and looking terrible.   They were giving her scheduled Zofran around the clock to keep her from vomiting, but it didn't help when the fevers hit.

This was our happy girl after Aunt Melanie came to visit and brought her a new Hello Kitty.  She was afebrile, and feeling fabulous!

All snuggled in with her animals.  She really wanted me to sleep with her, too, so it turned into quite the slumber party!

She did have a couple of really high fevers during the night, but by late morning on Wednesday, she started looking better and drinking pretty well.  They decided to send us home.  

Then, it was deja vu.  She started getting really sick and vomiting again.... and the fevers were back. Ibuprofen wasn't keeping them down, and she couldn't keep down liquids.  On top of all that, right before her antibiotics were due, her IV went bad.  The problem was, when she was febrile, she got mottled and clammy, and they could not find a vein anywhere.  They poked her 4 times, and we decided to give her a break and wait until the fever broke. 

Papa and Granny stayed with her, and Melanie ran me home so I could grab a few things.

Anthony and the kids came up to visit for a while, which made her really happy, and Grandma Bauer and Aunt Kayla stopped by for a few minutes.  

We got another IV around 10pm, and she was back on IV fluids for the night.

On our way back to the hospital, we had stopped to get her some balloons, and Daddy got her a big monkey...which she loved... and now had to have space in the bed as well! 

When they restarted her IV, I asked them to recheck her labs- mainly her WBC count.  It came back even higher.  Despite this, she had a good night, and the Ibuprofen managed the fevers well.

In the morning, the doctor came in and told us that the urine culture came back, and the bacteria in her urine was Group B Strep (very rare in children), and that the antibiotics she was on may not be treating the kidney infection.  So, they switched her to a different IV antibiotic.  She was looking really good, had not had fevers overnight, and she was keeping down liquids.  They decided to keep us for two doses of the IV Ampicillin, and send us home.

She had a couple pieces of fruit for breakfast, and I convinced her to try something for lunch.  She ate some mashed potatoes...and kept them down!  Yeah for solids!!!

That morning, it started snowing.  It had really started accumulating by the time we were ready to be discharged.  Thankfully, Papa and Granny came to our rescue again, and picked us up.  Little did we know, we were in for such a long ride home.  The usual 35-45 minute trip home from Portland, took us about 3 1/2 hours in the snow and traffic.  It sure beat staying another night in the hospital, though!  After about 8 hours of sleep in 4 nights, I was ready to be home and sleep in my own bed!
Kaitlyn is requiring a little more sleep than usual, and is still a little pale, but is doing really well.  We've spent a lot of time praying for our sick little girl, and are so thankful for God's healing touch!

We are so appreciative of all the great care we received while in the hospital, as well.  I have such amazing nursing friends that brought me breakfast and coffee every morning, as well as dinner one night.  They took such great care of Kaitlyn and me.  Friends checked in constantly to make sure we didn't need anything.... going so far as to offer to take home laundry and wash it for us- even all of the blankets that Kaitlyn had thrown up on!  I feel so blessed to be able to work with such an amazing group of doctors and nurses!