Day 2: Aubrey’s Bilateral Ureteral Reimplantation Surgery

Aubrey slept great through the night on her first night after the Bilateral Ureteral Reimplantation surgery so I was really hopeful that she would have a speedy recovery. The nurses were all great about keeping her medicated and comfortable. I was also very impressed at how respectful all of the hospital staff was during the night and trying their best to make sure that Aubrey stayed asleep when they would check on her during the night. In fact they were so quiet there were times when I didn’t even realize they were in the room. The next morning Aubrey woke up and requested breakfast, she was a little hoarse but I think that was due to be intubated for so long during her surgery. She only nibbled on a few things but I was happy that she ate and kept the food down. As the morning went on Aubrey started to complain of more pain but I think this was because the caudal block they had given her during surgery was starting to wear off. The nurses were trying to discourage her from using anymore IV morphine because she wouldn’t be able to use this at home, so we started to try the Tylenol with Codeine. It didn’t help as much but it seemed to take the edge of the pain off and make her comfortable.

bilateral ureteral reimplantation

By noon the doctor had called to get an update on how she was doing after her bilateral Ureteral reimplantation surgery. He decided to take the catheter out and see how she did before deciding on whether or not to let her go home. To say this was a major ordeal was quite an understatement! The minute she heard they were going to take the tube out she flipped, I tried to calm her as much as possible but the fear had already set in and there wasn’t much I could do but reassure her it would be ok. The nurse was great and tried to be as gentle as possible, but Aubrey was already so worked up. I felt so bad for her, but I knew as soon as they took the tube out she would feel better and would be able to move around more. The whole removal took about 15 minutes but once it was over she felt so much better. I went down to the gift shop and bought her a little squishy caterpillar to hold and this seemed to help a little.

bilateral ureteral reimplantation

After about an hour Aubrey decided she needed to go to the bathroom, I was extremely nervous because this would be the first time since surgery she had gone on her own. I was afraid it would be excruciating for her but she was such a strong little girl. Although it hurt a little she was ok and actually made it to the bathroom without any accidents. The doctor had warned us before hand that her bladder might not be able to hold urine for long and it’s common for even potty trained children to have accidents for a few weeks after the bilateral ureteral reimplantation surgery. We were prepared and brought along pull-ups which Aubrey was not happy about. She just didn’t understand why she couldn’t have her big girl underwear on. After we went to the bathroom Aubrey asked if she could walk around so we let her go up and down the hallway a few times. She loved it, but it didn’t take long for her to get wore out so we went back to the room and laid down.

bilateral ureteral reimplantation

If there was one thing that Aubrey couldn’t get enough of, it was all of the visitors and gifts that she received while in the hospital. She felt so special and I was so happy that everyone came by to say hello and help her stay distracted from the pain and boredom of being in the hospital.

bilateral ureteral reimplantation

After Aubrey went to the bathroom again by herself and her telling us she wanted to go home, we decided that we would go ahead and let the nurse know we wanted to be discharged. They were great about getting us up and out of there in less than an hour. My husband loaded up all of Aubrey’s balloons, stuffed animals and candy and pulled the car around for us. I was nervous about how Aubrey would feel on the ride home but she actually slept almost the whole way home. We stopped and got her prescriptions and then finally we were home. You never know how comfortable your bed is until you have to sleep in a chair in the hospital. Aubrey slept with me and my bed and my awesome husband slept in her bed so we would have plenty of room to move around. The first night home we were all exhausted and even Aubrey slept right through the night. I know it’s going to be a little while until Aubrey is back to normal but it’s so nice to be home and know that all of this is now behind us. I am so thankful that we decided to go ahead with the surgery, as hard as it was to see my baby suffer and hurt it was worse to watch her get sick month after month. We will go back to the doctor for a check up in a few weeks and then a follow up VCUG in a couple of months to make sure the kidney reflux is gone. But for now Aubrey is recovering and enjoying her time relaxing with Willow and Abby, our dogs.

Kidney Reflux

If your child is going through the same thing as Aubrey and you have any questions, please feel free to reach out. I know how scary it is and it’s always nice to have someone to talk to about it. I researched online before her bilateral ureteral reimplantation surgery and read so many horror stories and that’s why I decided to write about our experiences. The surgery was not a walk in the park but it wasn’t as bad as I thought it was going to be and I am so glad that we decided to go forward with it. Thanks for listening to Aubrey’s story.

Comments

  1. Melanie Johnson says

    I am so happy she is doing so well. The whole time I was reading her update, I had that feeling in my belly that mom’s get when their baby is in the hospital. You are both strong!

    • says

      Thank you so much for your kind words. It was so helpful to read everyone’s comments as we were all going through this tough time.

  2. says

    So glad she is doing well after her surgery. Zoe has her 18 month follow up on June 11, to find out if the reflux is the same, worse or better, we are hoping for the last. I’ll be sure to ask any questions just in case Zoe needs the surgery as she is a grade 3/4. I’ll be praying and thinking of her while she recovers comfortable at home.

    • says

      Nichol, I had no idea your daughter had reflux. Aubrey was first diagnosed at 5 months with Grade 3/4 and Grade 4/5. It did improve but never went away. If you ever have ANY questions please don’t hesitate to reach out, it’s a scary thing to watch your child go through something like this and it always helps to have someone you can talk to. I’ll be thinking about you and Zoe and hope that she is much better on her checkup.

  3. Laura says

    My daughter, Hope (12 years old) just had Bilateral Ureteral Reimplantation on July 9th. We stayed in the hospital until July 12th (yesterday). The hospital and the staff were amazing and I wish we were still there. This was so much easier in there.
    Hope, has had reflux pretty much since she was born, but wasn’t diagnosed with it until 2 months ago with Grade 2 on her left and Grade 4/5 on her right. Before she was diagnosed she was getting UTI’s all the time and we didn’t know why. Finally, our new primary care doctor sent us to a specialist who ran some tests. 12 years of dealing with UTI’s and we finally have a doctor that will run tests. Goodness. Come to find out she has reflux. I thought she wasn’t keeping clean down there or wiping properly but I was obviously wrong.
    So, on July 9th, 2012 she has the surgery and after the surgery the dr. said everything went as planned. I get to meet her in the hallway and we travel to her room (she’s on the hospital bed being pushed by two paramedics). She doesn’t understand how the catheter works and is yelling at the paramedics that she seriously has to pee. We get to the room and get her off the bed and onto the toilet where I show her that the catheter tube is filling up and that she’s going pee without having to sit on the toilet. I tried my best to explain how it worked but she was so irritated that she had this “thing” in her and she griped and moaned until the morning of the 11th when they finally took it out. I was up all night with her, the first night, because I guess the tube (where it was strapped to her leg) was kinked and made it leak all over the bed and her gown. She kept telling the nurses that the catheter wasn’t in right and they told her that they could put a new one in or wait until the dr. called with the authorization to take it out. She chose the second option. She was NOT having them put another one in. A new nurse came in and I explained what was happening (with the leaking) and she looked at the tube and found the kink. It took 2 minutes to un-strap, straighten the tube and re-strap. It worked perfectly fine after that, but Hope still didn’t want it in. The 10th was just a day of misery and sleep. She didn’t want to eat anything but Jell-O, which the nurses were fine with. When she was awake she’d watch TV or we’d chit chat a bit until she fell asleep. On the 11th she finally started eating crackers, one chicken nugget and a lot more Jell-O. They took her off the IV and took the catheter out. I had one happy girl that day! 😀 We walked to the elevator, went to the first floor and straight to Build a Bear (this was a very cool hospital), we made her a sheep that she named Shawnee, after my youngest sister. We walked back to the elevator, back to the fourth floor and back to her room. That was a very long walk for her and she was happy to get back in bed. On the 12th the dr. came in and said she could finally go home. We stayed until lunch was over and then packed up and went home. (I wish we could have stayed one to two more days…it’s much easier when you have people around to take care of everything.)
    OK. Now for the issue that I’m actually inquiring about…Ever since the catheter has come out she has had to pee every hour to every hour and a half. When she’s sleeping (at night) she only has to pee every 3 to 4 hours. The dr. did tell us that she’d feel like she has a UTI, and that’s exactly what it seems like. She rarely complains about her incision but constantly complains about how bad her private part hurts. I don’t know if it’s the urethra or the clitoris that’s hurting but I do know that’s where she’s talking about. Every time she uses the restroom there is less and less blood so I’m thinking that’s a really good sign, but there is still the pain. The kind of pain that brings tears to her eyes and she feels like she has to bite on a towel. I’m giving her the Tylenol with codeine and the anti-biotic. She’s also gotten a rash, or chapped skin, from her labia all the way pass her anus to her butt crack. It’s not chapped so bad that it’s bleeding but it’s red and bumpy. I’m having her use toilet paper first and then cleaning with baby wipes now, to try and clear up the rash. She won’t put anything on it (even though I’m the mom, she’s pretty much the boss when it comes to these areas). I know, sooner or later, she will use something on it.
    She doesn’t go back to the dr. for a checkup until August 13th.
    I was wondering, did your daughter have this kind of pain in her private areas? If yes, what did you give her, or what did you do, to help ease the pain? How long did it take her incision to heal? How long until she stopped peeing blood (if at all)? Did she have any other pains or issues?
    I’m trying to get an idea of how long Hope is going to be hurting. I know she’s unable to be active for quite a while but I don’t want her to be miserable through this whole healing process.

    I really appreciate that you wrote about this for the public. I did a lot of research before her surgery, but that’s just research. Nothing really can prepare you for this because every case is different, every child is different. I don’t know how I’m going to be notified that you responded. If it doesn’t send me a notice to my email will you? My email is walleria44@msn.com.

    Thank you so very much,
    Laura Hanson :)

    • says

      Hi Laura!
      I’m so glad that you came across this post! One of the main reasons that I decided to write about Aubrey’s experience was to help other people that are going through the same thing. She did have pain when going to the bathroom for about 3-4 weeks. She would have spasms so the doctor prescribed Ditropan that she would take 2-3 times per day. This medication helps to relax the blatter so that it won’t hurt so bad when urinating. She had blood in her urine for about a week and then it went away but they did warn us at the hospital that it could take up to 6 weeks for it to completely go away. Her incision didnt seem to bother her much and it was healed up within a few weeks. It’s been a few months since her surgery and she is doing GREAT! I am so glad that we decided to do the surgery and hopefully she won’t be having anymore UTI’s! I hope that your daughter feels better very soon! Let me know if you have any questions or if you just want to talk :) You can email me at the contact button at the top of the page.

  4. Tracy says

    This made me feel so much better. We have been dealing with my 8 year old sons reflux since before birth (it was found in utero) and he is finally having surgery December 13th. I have unfortunately been reading some absolute horror stories but this one has made me feel so much better and like I am doing the right thing. Not only is his reflux grade 4/5, he has stage 2 kidney disease. He will also most likely have his left ureter narrowed because it is soooo large.

    • says

      I am so glad that you found this post about Aubrey. I really struggled with whether or not to share such a personal story but I felt like maybe it would help someone that was in a similar situation. I searched the internet for stories on this surgery before Aubrey was scheduled to go in and all I found was horror stories about how bad it was. Aubrey had such a good experience I felt like I needed to share her story. I wish you and your son luck with the surgery. It was one of the best decisions we have made, she has had no issues since May! Good Luck with everything and please feel free to reach out if you ever have any questions.

  5. Caroline says

    Thank you for writing about this operation. We are in the hospital right now on our first night after the operation this morning. My son is 2 years 4 months and was diagnosed with hydronephrosis in his left kidney in utero and when he was born with reflux in both kidneys. He only had one UTI at 2 months old and never had any other one since he takes antibiotic low dose every night. It’s been a hard day for us because he had been very uncomfortable and apparently has had a few spasms in his bladder. The nurses have given him good pain medications and he had been able to sleep. I am happy we did the surgery since the doctor said his reflux would not resolve on its own and we wanted to avoid any damage to the kidneys. I am praying for him to feel much better tomorrow . I am sure he will be much happier when they take te catheter out. Thanks for the post!

    • says

      I am so happy that I was able to share my story with others that are in the same situation. Whenever Aubrey had her surgery I had heard so many horror stories that I wanted to be sure to share her experience to hopefully help someone else. Your son is in my prayers and I hope that he has a very easy and quick recovery. If you ever have any questions, please feel free to email me anytime.

  6. Sarah says

    I realize I might be a little late to this post but thought I’d give it a shot anyhow. First of all, thanks to all of you ladies for sharing your stories. My daughter (nearly 4 years old) was also diagnosed in utero with kidney reflux and was put under the care of one of Kansas City’s best pediatric urologists from the day she was born. She was placed on Bactrim as a newborn and underwent ultrasounds and VCUG’s at age 1, 2 and again today. Prior to now, the doctor had always said surgery is a last result, as despite a grade 4/5 reflux, she had only 2 UTI’s while on medication. We were told to stop the Bactrim when she was potty trained and in the last year and a half she’s had only ONE UTI. Fast forward to today’s test results – her reflux still exists but is a 3/4 instead of a 4/5. Her kidneys looked great on ultrasound. The very same pediatric urologist said our chances of self-correction at this age went from 50% down to 30-40% and he recommended the bilateral ureteral reimplantation surgery. In fact, he pressured us to book a surgery date before we even left the office today. I was completely caught off guard and told him we’d need to think about all of this first.

    After reading this thread, it just seems unnecessary to operate from a total of 3 UTI’s in nearly 4 years. Repeated infections or other kidney problems make sense, but we’ve been lucky on that front. I’m considering getting a second opinion on my daughter’s case as that “mommy instinct” is telling me something seems off here. I welcome any and all opinions!

    Thank you,
    Sarah

    • says

      Hi Sarah! I ‘m glad you found this post! I would definitely get a second opinion because you always want to follow your gut feeling especially when it comes to your kids. We had originally scheduled Aubrey’s surgery about a year before she actually had it and canceled it because my husband and I were not convinced that she needed it. After stopping the Bactrim a couple of times and seeing that she would have re-occurring infections I knew it was time for us to get it fixed. She has had no issues at all from the surgery and no UTI’s! I am thankful that we went ahead with the surgery but I feel like we were ready at the time. Good luck with everything and if you have any questions or just want to talk feel free to reach out!

      Mellisa

  7. Christi says

    Hello I am so happy that you wrote about this & that I was able to find the posts. My 5 year old son Maddox has to have the Bilateral Ureteral Reimplantation Surgery along with the Meatoplasty Surgery next month. As a mom I am extremelly worried about every aspect of the procedures. I’m glad to hear that your daughter did well and that you are happy you went through with the surgery. Now that you are a year later…do you have any regrets? His doctor said that he plans to keep him 3-4 nights and have an epidural left in for a day or two. I have researched his doctor and seems like all is good with him. Still I’m nervous. Thank you again for writing this.
    Christi

    • says

      Hi Christi! I am glad you found this post. It’s been over a year and I am so happy that we went through with the surgery. I have absolutely no regrets. She has done great and has had no infections or problems whatsoever after the surgery. If you ever have any questions or want to talk you can email me privately at funsavingmoney @ yahoo.com

      Mellisa

  8. Winnie says

    Thank you for sharing your experience. I was somehow relieve after reading your post and reading other mom’s experiences. My son had a ureteroneocystostomy just this last May 9, 2015. He is now 3 years old. He has VUR grade 4-5 on his left. When he was 7 months he was already circumcized. Actually, we asked for two doctor’s opinion. The first opinion was he wants to do the operation, while the second doctor suggested circumcision since he was too young. And it is possible that there will be improvement as he gets older. He had 3 UTIs when he was 1 month, 3 months and 5 months old. After he was circumcised he never had a UTI anymore. We stop using diapers and we monitored his pee. Actually, just like other parents we had second thought if it is time for him to undergo ureter reimplant. Because he never had UTI anymore. But his nephro and uro said that eventhough there is no infection it is better for him to undergo operation to avoid kidney scarring. Honestly, I am more afraid of anesthesia that the operation itself. Well, after many prayers, we decided to go on with the operation. The operation was successful considering my son recovered so fast. Back to normal after 2 days. His catheter was removed the day after his operation. The tube was removed on the 4th day. And my son was discharged on the 4th day also. We don’t have any problem except my son has a very hard time when urinating, as if he has UTI. It has been 1 week and 2 days after the operation. His urine is almost clear now but the pain is still there. I am so worried.

  9. Varsha says

    Hello Melissa

    Thanks for sharing your experience at the hospital before, during and after the surgery. My daughter who is only 15 month s is scheduled for the same surgery in 2 weeks. I am really worried about the pain part. Since my daughter is still a baby, and cannot explain pain yet, I don’t know if I should wait longer for the surgery. At the
    same time, I am also worried about about utis. Do the nurses really manage bladder spasms well with med? Did u have only one catheter or 2? Did she have any catheters in her when she was discharged? Please let me know. I am sooo anxious, I am rethinking about the surgery. My daughter has had 2 UTIS when she was 5 weeks old. Since then she has been perfectly ok. I just can’t even justify to myself about my decision to have the surgery. Did u ever rethink this decision?

    Thanks

    • says

      Hi Varsha!

      I am so glad you found my post about Aubrey. To answer some of your questions, the pain was managed very well from the beginning. I made sure that they stayed on top of it from the very beginning. The last thing you want is for it to get out of control. For the first few days I would definitely ask for medication every couple of hours even if she is not showing signs of pain. Aubrey only had one catheter and it was taken out the day we left the hospital. We didn’t have any at home.

      My husband and I struggled with the decision to go forward with the surgery and yes we did rethink it many times. In fact we were scheduled for the surgery once and decided at the last minute to cancel it. With that being said I am very glad we went forward and decided to do it. Aubrey has had no issues what so ever since the surgery and I am so thankful we got it taken care of early. Please reach out anytime with questions or if you want to vent. That’s why I did this post, so I could hopefully help other moms going through the same situation. Good luck!

  10. Maryjane says

    Hi Melissa – Just came across your blog and so glad that I did! Thank you for sharing. My 2 year old is scheduled for bilateral reimplantation on 9/3/15 and I am pretty anxious about it. My 5 year old daughter was also diagnosed with VUR, but hers has resolved (yay!). Unfortunately, Corinne’s has worsened to a grade 4 in less than 9 months (from a 2/3). We were given the option to decide between Deflux or Reimplantation….. it was really difficult to decide but ultimately we went with Reimplantation since her reflux is at a grade 4. I hope it’s the right choice. Hearing your positive experience definitely puts me at ease. If you have any suggestions or advice besides what you’ve already written, I would love to hear it. Thanks again!

    • says

      Hi Maryjane!

      I am so glad you found the post about Aubrey. Before her surgery I looked online at other’s experiences and only saw horror stories. So after Aubrey’s experience I felt like I needed to share that it wasn’t as bad as we expected. She is doing SO good now and hasn’t had any issues since the surgery. We are so glad that we decided to go through with it. Please feel free to reach out anytime if you have questions for if you need someone to talk to. Good luck to you and your little one. :)

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