Kidney Reflux
Posted in Whatever Wednesday and tagged with Baby, Daughter, Kidney Reflux, Medical, Sick on 06/24/2009 03:14 pm by lori
Jonathan and I took Abigail to get her VCUG test today (I talked about this here). It was absolutely heart wrenching.
They put her in a plastic cradle and tied her arms down with cloth and her stomach with an ace bandage.
Immediately, she started crying. So, we gave her a little rubber ducky that she likes and started reading books to her. We’d get her to calm down every so often (and by that, I mean sobbing) when I’d ask her “What does a fish say?” or “Can you say, “PapaBon,” etc, but she cried for at least 20 minutes straight. When they put the catheter in, I had to step away, so she wouldn’t see the tears starting to form in my eyes. It was rough.
The technician said that he couldn’t put a grade (1-5) on it, but she was refluxing. Then, I got a call from my Pedi’s office a few hours later, and the Pedi (our normal Pedi is out for the summer) said that the full report isn’t ready yet (we’ll hear from a Urologist), but that Abby has between a Grade 2 or Grade 3 Kidney Reflux, probably a mild 3. He said his daughter had a Grade 4, and she had surgery for it. Scary.
He called in an Antibiotic, and we’re supposed to give it to her every day for about 9 months. And then, she’ll have another VCUG. Not what I want to hear.
**UPDATE: Jonathan and I were talking about this test when he got home from work. He said the part that killed him was when Abigail was signing, “All done” over and over again.**
**Another Edit: Abigail was also sobbing “out,” “down,” “up,” and “please” every few minutes during the procedure. Poor girl. I hated that I couldn’t get her out. For those of you who have wondered what kidney reflux is, here’s a short version (as best as I can understand it): Normally urine flows from the kidneys through tubes called ureters to the bladder, then into the diaper. Vesicoureteral Reflux (kidney reflux) happens when the bladder contracts and some of the urine goes back up into the ureters and in Abigail’s case (grade 2-5 reflux) goes back into the kidneys. This puts pressure on the kidneys, scars the kidneys, and provides an opening for bacteria to go up farther into the body (hence her urinary tract infections).
Does anyone have kids with Kidney Reflux? I’m trying to find out all the information I can on it.
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June 24th, 2009 at 3:22 pm
Oh, my heart and eyes were tearing up just reading this. I know how hard it is to see your baby having to go through this. Will be praying the antibiotics takes care of it so she won’t have surgery.
June 24th, 2009 at 3:31 pm
Thanks Janet. I know it’s not as bad as Jesse w/ meningitis, but it’s tough to see your baby scared.
Lori’s last blog post..Kidney Reflux
June 24th, 2009 at 3:37 pm
Poor baby! I’m so sorry she’s having to go through this.
June 24th, 2009 at 3:54 pm
Oh Poor baby and poor Mommy! So sorry she is sick!
June 24th, 2009 at 4:13 pm
Oh Lori! I’m SO sorry to hear this. I imagine that today was one of the hardest days of your life. I’m so sorry you, Abby, and Jonathan had to endure that. Idk if you are familiar with the Steece quads blog(she graduated from Harding, they live in TX, but the daughter, Savannah, has kidney problems including reflux. I think hers is very severe, but thought I’d leave the link for you to see:
http://thelifeofsuz.blogspot.com/2009/06/savannah-her-kidneys-and-upcoming.html
Y’all are in our prayers. Love you.
Audra’s last blog post..The Attack of the Ivy
June 24th, 2009 at 4:21 pm
Valerie & Jess- Thank you.
Audra- I don’t know her, but I will check out her blog. Do you know her? Thanks.
Lori’s last blog post..Kidney Reflux
June 24th, 2009 at 4:25 pm
tara silvestri’s last blog post..Camping!
June 24th, 2009 at 4:34 pm
Lori and Jonathan, I don’t have the words to say I read this and tears came to my eyes such a sweet beautiful family we love y’all and will be praying!!!
June 24th, 2009 at 4:42 pm
Tara- I know; it’s super hard to see your child hurt– no matter what made them get scared or hurt.
Jordan- Thank you for the prayers. We really really appreciate it!
Lori’s last blog post..Kidney Reflux
June 24th, 2009 at 4:44 pm
Neither of my kids have had that, but when I worked at Arkansas Children’s Hospital I had to take a lot of babies down to Radiology for a VCUG. Not fun, I agree, and they weren’t even my babies! I had a few that had to have surgery, and while I hate it when people say something was a “minor” surgery on a baby, it really was compared to other things they could have had. And they always seemed to recover and clear up immediately. The antibiotic will help keep her from getting the recurring and worsening UTIs-which I’m sure your doctor already told you. We’ll be praying for her.
June 24th, 2009 at 4:48 pm
Oh, what a hard day for all of you. I’m so sorry. We love you all and are praying.
June 24th, 2009 at 5:07 pm
I’m so sorry, Lori! I’ll be praying for you guys!
June 24th, 2009 at 7:44 pm
Yuck!! I’m so sorry! I was going to send you to the Steece’s blog also. Do a search because Suz has written several times about Savannah’s kidney problems.
We’re praying!!
June 25th, 2009 at 9:22 am
Lori, I am sorry to hear about Abigail being sick! She (and you and Jonathan) are in my prayers! Hope she gets better soon!
Jennifer Lowe’s last blog post..Little Rock, Part One
June 25th, 2009 at 10:29 am
I love you, cousin! And Jonathan and Abby!
June 25th, 2009 at 10:41 am
Oh no, I am so sorry to hear that. I can only imagine how hard that is on you. I will say a prayer that everything turns out fine and she will be healthy.
Jenna @ Newlyweds’s last blog post..Meet the Newlyweds Donald and Sarah
June 25th, 2009 at 11:14 am
@ Allison- Thanks. Did you assist in deflux or ureteral reimplant surgery?
@ Diana, Emily, Ashley, Jennifer, Alissa, & Jenna- Thank you for your prayers!
Lori’s last blog post..Kidney Reflux
June 25th, 2009 at 4:37 pm
oh poor sweet girl, that was heart wrenching. i am so sorry. i hope and pray that it will correct itself and no surgery will be necessary.
kim’s last blog post..Boojiboo Flirty Apron GUEST GIVEAWAY!!!!
June 25th, 2009 at 10:18 pm
I held back the tears till the “all done” part.
Adding my prayers to the list…
Trish
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June 26th, 2009 at 9:43 am
Lori,
as usual I am late reading things… I am so so sorry… it is so hard to watch your baby hurt… I really starting crying when Jonathan said that she was signing all done… poor baby… she was pleading for them to stop… I am so so sorry and will praying that God will heal her and that she won’t have to go through another one of these tests. Father, if my heart was breaking for this little one and I am just her GramB… you are her Creator and you know all her thoughts… oh my Father, please intervene in this situation and please remove this problem from Abby… please Father heal her little body … touch her in such a way that she will never have to go through such an ordeal again. Hear her little crys that this will be all done and that she will be healed. Because I Jesus I trust in you and know that you will be with my sweet children. GramB
June 26th, 2009 at 10:15 am
Oh Lori, my heart goes out to all of you. I can’t imagine watching my baby go through this either, and like a lot of other people said, the “All done” signing brought tears to my eyes too. I know the 9 mos. of antibiotics sounds awful but hopefully she will be well through all that, no more yucky UTIs. I’ll keep my eye out for info on this, and you’ll all be in my prayers. Keep the updates coming!
June 26th, 2009 at 1:35 pm
lori. this post made me cry. bless her little heart. i hope she is feeling better. i can’t imagine having to watch my son go through something like that. it breaks my heart for her. i don’t know anything about kidney reflux in children. but i do read a blog, steece’s pieces, and one of her kids, savannah is going through the same thing. she has quads & i believe her daughter is close in age to abigail. here is the link to her post: http://thelifeofsuz.blogspot.com/2009/06/savannah-her-kidneys-and-upcoming.html if you look around on her blog she talks about it a lot. i bet she could be helpful to you. i’ll be praying for little abigail & you & your hubby!!
audrey’s last blog post..My Baby Daddy
June 26th, 2009 at 3:47 pm
No, I didn’t assist in the surgeries. Just the testing and taking them to/and recovering them from the surgery.
June 27th, 2009 at 2:39 am
Hi Lori..Remember me Sonia w/ underweight daughter…sorry to hear about Abigail. My heart goes out to your family. I want to cry looking at that picture of her in her hospital bed. I will keep you in my thoughts. Congrats on your pregnancy. My daughter is eating more since I weaned her so hopefully a better report about her weight from the Pedi. Last visit 15.4 lbs at 15 months before weaning her. I am so amazed how advanced Abigail is with her speech!! She’s a very smart cookie (I know you don’t need me to tell you that). Take care and keep us informed on Abigail’s progress/condition/treatment.
June 27th, 2009 at 10:28 am
Kim, Trish, GramB, Audrey- Thanks for the prayers!
Katie- Yeah, let me know any information you come across. Thanks.
Sonia- Yes, I remember! Oh, and I’m not sure what made you think I was pregnant, but let me confirm for everyone . . . I am not pregnant; not ready for that yet. It is fun seeing her talk. She learns several words a day now.
July 5th, 2009 at 1:34 am
How is Abigail doing?
July 5th, 2009 at 10:33 am
Jess- Thanks for asking. We’re actually home from church because she has/had a 102.2 degree temp. under the arm, and she’s super fussy, etc. Soooo, we’re hoping it’s not another UTI. Hopefully we can get an appt. w/ her Pedi tomorrow.
July 10th, 2009 at 12:51 pm
My daughter just went through the same thing…she is six years old and has been refered to Dornbeckers Childrens Hospitol where I hope that they will take her off the antibiotics and fix the problem.. These little kids being on this medication can cause lots of problems in the future. Please talk with your Dr, 9 months seems like a long time.
Good luck,
My prayers are with you.
Susan Shepherd
Oregon
July 10th, 2009 at 1:20 pm
@ Susan- I’m sorry your daughter’s dealing with the same stuff. How long have you known she has kidney reflux? Are you thinking they will do surgery? Or deflux?
We have an appt w/ a Pedi Urologist next month, so we’ll know more than.
July 14th, 2009 at 9:02 am
Hi Lori, my name is Alejandro and I’m from Argentina (so, sorry if my English is not good). I had the same thing on my left kidney, and had a surgery to extract it when I was only a year and 4 months old. In fact, yesterday was 28 years since the surgery.
Obviously I can’t tell you much about it, but if you want I’ll try to talk with my mom, she never told me much about it and I’m guessing that is difficult for her to relive the moment. All I can tell you now is that she tells me ‘happy second birthday’ every July 13th (And I don’t know why, but I keep forgetting the date. Every year it’s like “oh, that was today?”). And that my post surgery was easy for me, to the point that when they let me go down from the bed I ran through the hospital with the catheter still on like nothing happened and she was chasing me with the serum and the catheter.
About me, I am able to live a normal life with one kidney. Each 2 years or so I go to a hospital for some tests on my other kidney, just in case.
Abigail has reflux on both kidneys? How old is she?
Alejandro’s last blog post..YAY!
July 14th, 2009 at 9:43 am
@ Alejandro- Tu hablas ingles muy bien. It sounds like your reflux was so bad that your kidney began to fail, or at least get scarred? Do you know what Grade (1-5) you had?
Yes, Abigail has grade 3 reflux in both kidneys. She is 16 months old.
July 14th, 2009 at 10:20 am
Oh, I’m so sorry to read that. Please give her a big hug from me. How is she doing?
I don’t know what grade I had, I hadn’t have any idea of the grades until I read it here. But yes, my kidney was unrecoverable, there was nothing to do to avoid the surgery. So I’m guessing 5.
Your Spanish is good too!
Alejandro’s last blog post..YAY!
July 18th, 2009 at 12:48 pm
Hey, I came across your site while I was researching kidney reflux. My daughter Aubrey is 16 months old and was diagnosed last year at 5 months with grade 3 and grade 4 kidney reflux. She has been on lose dose antibiotics for almost a year now. She is scheduled for her floow up VCUG next month :(. Since being on the antibiotics she has had no UTI’s. If the reflux is the same or worse than we will have to do the surgery. I would love to get in touch with you and hear what is going on with your little one. It is nice to have someone who is going through the same issues.
July 18th, 2009 at 1:14 pm
Mellisa- Thanks for visiting and leaving a comment! I’m glad you found me, too. I’ll send you an email, so we can keep in touch.
August 5th, 2009 at 1:00 pm
Lori,
My daughter has kidney reflux. She was diagnosed when she was 3 months old at stage IV. She is now 5 years old and still remains on the antibotics. Her last test was at 4 years old and she was still at stage IV. She is now on 2 antibotics, one in the am and the other at night. She
has only gotten a few infections while on the medicine, but they are becoming more common as she gets older. She refuses to take the antib. some days because it tastes so bad.(even with flavors). She goes back to the Arkansas Children’s hospital when she is six. I was told that she would grow out of it by age 4 and that there would not be a surgery unless she didn’t grow out of it. So, it appears to me that we are looking at the surgery route on the next visit. I can sympathize with the VCUG. They are so little and it just breaks your heart. My daughter would not void the dye the last time we had the test. She held every ounce of that fluid that they filled her bladder with and held it for 30 minutes until they gave up on her and let her go to the bathroom. Now she knows what happens when we go to Little Rock, AR for testing. I hope Abigail is able to grow out of her reflux.
August 5th, 2009 at 5:10 pm
Nancy- Thanks for leaving a comment. I’m sorry y’all are dealing w/ reflux, too. I’ll send you an email to ask you some questions.
August 11th, 2009 at 5:42 pm
Wow! You’ve been busy creating this blog on reflux. I hope it’s been helpful for you and these other moms to connect. It sounds like they are exactly where I was (especially the last one) nearly 9 years ago w/ Hannah. The yearly VCUGs was tortuous for Hannah and for me, not to mention the struggle over the daily antibiotics. Thank God that is behind us all now. Her surgery (both sides) corrected the reflux without any complications. Keep me posted on how Abbie’s doing, k?
January 10th, 2010 at 5:44 pm
i have commented before i had kidney reflux when i was little and had the reflux doone i was good for abot 5 years then it came back again as a level 2 and i got a diff. surgery done and have no problems since(i had a level 3 mild in the begining)
March 21st, 2010 at 9:23 pm
Hey. Just came across this when I was doing some research. My son has grade 5 reflux in his right kidney. He also had a 100% blockage in his left ureter. He has had 3 surgeries since he was born. He is only 5 months old and has spent quite a bit of time in the hospital. We have a GREAT doctor in GA. My email address is lnr8827@aol.com, I would love to know how your little girl is doing.
March 22nd, 2010 at 2:35 pm
@ Lauren- I’m so sorry for what you’ve had to go through with your baby boy. Hopefully it will all be cleared up by the time he’s a “big boy”, though!
We just had my DD’s 2 year appointment with the Pedi, and she recommended waiting until June-Sept. to do another VCUG. She said the ultrasound isn’t completely necessary. Luckily, we don’t think Abigail has had any breakthrough infections while on the Bactrim. We still haven’t tried potty training because of the risk of infection, but after we see the Pedi Urologist, they might give us more direction. Thanks for asking. I pray your son stays well!
April 7th, 2010 at 10:36 am
At 11 months old my daughter had the VCUG at Cardinal Glennon Childrens Hospital in St. Louis, Missouri. It was no where near as traumatic as the test your child went through. She was not tied down. My husband actually got to hold her after the dye was injected while we waited for her to void. My daughter has grade 5 bilateral kidney reflux. She has had break thru infections on her daily antibiotic. This is a process for sure. Parents have to educate them selves on this issue and pay attention to their children. Our daughter does not show outward symptoms until her infection is severe. When she had her first severe infection with 106 temperature, the first urine culture came out normal. The doctors were beside themselves when the second culture came back and the renal untra sound showed how badly infected her kidneys were. We had to learn her behaviors that hint at an infection starting. I pray your child continues to do well.
April 10th, 2010 at 9:48 pm
@ Tina- Sorry your daughter is having to go through this. I hope it clears up without too many problems. Keep me updated if y’all do surgery, or any other big decisions.
May 7th, 2010 at 8:21 pm
So sorry to hear this:( I just came apon your blog, my son had grade 5 relux. He is 2 years old, and he has been through many VCUG’s and has had the reimplantaion surgery. I hope, being grade 3, your daughters will heal without needing surgery. I will keep you and your daughter in my prayers.
May 8th, 2010 at 11:31 am
Thanks Lindsey. Those VCUGs are hard. We’re going to have to do another one soon since it’s been almost a year since Abi’s last one.
Do you have more than one child? I have a newborn now, and we were wondering if we should get her a VCUG while she’s young to see if she has reflux. What do you think?
August 14th, 2010 at 1:36 pm
Im not even sure how I ran across this page but my daughter has kidney reflux as well and it is getting worse. I was just wondering how your little one is doing now? Did she have to have surgery? I’m really scared about my girl, they say there’s a slight chance she could grow out of it.
August 14th, 2010 at 1:46 pm
@Shay- So sorry. I’m hoping it will get better for your girl!
Since this post, she only has had one breakthrough UTI (it was the following month). So, she’s gone a year without a UTI, and we actually haven’t been back to the Pedi Urologist since October. We had been giving her Bactrim, but I got worried about giving it to her all the time, so I stopped (not sure if that was a good decision or not). She is now almost 2.5 years old and has wanted to start potty training. Hopefully things will go well. We haven’t had a follow up VCUG because frankly, I’m scared to put her (and us) through that again. I’m kinda just waiting to see if she has another UTI, and if so, then, we’ll be proactive about it. Yeah, we’ve been praying our DD will grow out of it, but only the VCUG would tell us whether she has or not.