Diapering Solutions
For those of us with kiddos that have urinary diversions (vesicostomy in our case) you know that it’s always a struggle to keep our little ones dry. We’re always trying to come up with a new and more creative way to diaper. So I figured I would pass along the things that seem to be working for us right now.
We still use a size 4T pull-up with a small diaper turned inside out and tucked in the front over the stoma. It’s not ideal, but it seems to be the best thing that we’ve been able to find. We have discovered a few things throughout our journey that make keeping her dry and comfortable a little easier.
The summer isn’t too bad for us. Lizzie can wear dresses, and as long as we change her diaper frequently, she stays dry. Winters are a lot more difficult. For one, pants have never been a good option for Lizzie because of her stoma. We just can never keep her dry and comfortable in them. Things just don’t stay in place very well. Dresses haven’t been a good option either because tights have the same effect, and without them she freezes her little legs off. When she was little we just kept her in one piece outfits. That begins to get a LOT more difficult once you get out of the 2T range. You can sometimes find a few 3T-4T, but they are VERY limited other than overalls. Lucky for us we live in the country, so we do a lot of overalls. lol! Even better yet, we found a workable solution!
These are the Baby Legwarmers I made for Lizzie!
Baby Legs! They are fabulous, and even better they are super simple to make if you don’t want to shell out a bunch of cash to buy them. Basically they are leg warmers. They look like tights/leggings, but they stop at the thigh which makes them perfect for Lizzie. Now she can wear dresses without freezing to death, and diaper changes are super easy because you don’t have to take off shoes and tights. You can just pull the pull-ups up over the shoes and baby legs! So much easier than overalls! And I used women’s knee socks to make them, so they only cost $1-$3 to make! Here’s the tutorial I used to make mine.
Our next exciting new find has yet to be fully tested, but we are hopeful. As I’m sure many of you may know, night time is the most difficult time to keep our kiddos dry. For one Lizzie drinks a lot at bed time, and we try not to limit her water intake too much because of her constipation issues. We discourage late night drinks, but we don’t limit them if she insists. Sometimes that makes for a very wet night. Once Lizzie wakes up wet, it’s often hard to get her back to sleep. As long as her pajamas stay dry, she usually does ok. So we had some custom cloth diapers made for Lizzie (which I’m hoping to get over the Holidays!). They are higher in the abdomen area and have really absorbent inserts that velcro into the front. They also velcro across the front to adjust the sides, so we are able to keep them really tight. The outside is made of a waterproof material that will help keep the pjs dry. We’re hoping it works, especially now that it is getting cold at night. When I get them, I’ll be sure and post pics and let you know how they are working out. I wish we could use them all the time, but with a constantly draining stoma, it just doesn’t seem doable. I am considering going back to cloth inserts for her pull-up, but I think that is as cloth as I can get right now.
The last recent finding is fold down pants. They are the stretchy knit pants that fold at the waist (like this, only in a smaller size). Instead of folding them down, we keep them pulled up so that they come higher than her pull-up. It has actually worked pretty well in keeping everything in place too, which is a bonus. Again, as long as we keep her changed often, we can keep her pretty dry. She still has the “lump” at her abdomen from the little diaper, but a long sweater takes care of that. Another great thing about them is that Walmart has them for $5 a pair up to 5T!
I know a lot of you are also onesie users, so I thought I would pass along a few other links. This is a great onesie making tutorial in case anyone wants to try your hand at making them yourself! And here is a link to onesie extenders so that you can make your 2T’s into 3Ts. These might also be pretty easy to make! Here is a link to a site that makes onesies up to 5T. They are a little pricey, but these can be hard to find sometimes! fwiw The Children’s Place also makes 3T onesie long sleeve shirts in limited quantities.
If anyone has any other creative diapering ideas, we would LOVE to hear them! You can leave a comment here, or join us on our message board here. For more information on what a Vesicostomy is and how to care for them, click here.
Lizzie’s Video
I created a new video about Lizzie’s journey with kidney reflux, and wanted to share it with those of you reading my blog.
I also highly recomend onetruemedia.com. It was super easy and free to make the video!
Ureteral Reimplatations and Why they Fail….
Everyone who has a child with VUR has heard the statistics on ureteral reimplant surgery. It’s successful 98-99% of the time. Odds are, if your child needs this surgery, you will never have to worry about the procedure failing, nor will you ever have to worry about reflux returning. So what about that other 1-2%? What is it that causes reimplantations to fail, and is there anything you can do to make sure it doesn’t happen to your child?
I’ll preface this blog post by saying 2 things: 1- I am not a doctor, not a nurse, not a scientist. I spend a lot of time researching VUR and other renal abnormalities, but I am no expert, so this is in no way medical advice. 2- I have a daughter who’s ureteral reimplant failed and much of this is based on our experience.
So why do ureteral reimplantations fail?
I think the first, most obvious reason is doctor error/incompetence. While we would love to believe that doctors hold some kind of special power of all knowingness, they don’t. They’re people just like me and you. If the doctor doesn’t perform the procedure correctly, it won’t work. So be sure you feel confident with your child’s doctor and don’t be afraid to get a second opinion, or a third.
I often hear that age is an important factor. I go back and forth on this one. The data that I have found suggests that the percentages of infants (under 12 months) having successful surgery is lower than older children, but only by 5-7% (I believe I read 92% success rate in one study- I’ll see if I can find it and add a link). I have been unable to find a comprehensive study that looks at all of the age factors, although there are studies that show reimplantation done before the age of 3 months, can adversely affect the bladder and how it works later on. I guess my point here is that if your child NEEDS the surgery (due to recurrent UTI, renal abnormalities, kidney damage, etc) odds are still majorly in your favor and you should do the surgery, however if your child has a lower grade reflux, with no abnormalities or recurrent UTI, it might be beneficial to wait until they are at least 12 months or older. I’m probably a little biased on this one since Boo’s surgery was done so young (5 months) and was unsuccessfull. Even knowing what I know now, we would have still done the surgery because of her situation, but I often wonder if her young age didn’t have some effect on the outcome. Who really knows?
Another cause for reimplantation failure is if the reflux is actually Secondary VUR (caused by an underlying condition) and not Primary VUR. There are a number of conditions that can cause this, one being dysfunctional elimination syndrome (DES). There are a number of studies that show DES can slow down resolution rates as well as studies showing that many of the children with failed reimplants have some type of DES. If the underlying condition is not corrected, the reflux is not likely to be corrected. Another condition that can cause recurrent reflux is a neurogenic bladder. This can be caused by occult spina bifida, tethered spinal chord or other spinal defects that disrupt the nerves in the bladder. Another rare condition is called a non-neurogenic neurogenic bladder (Hinman-Allen Syndrome). In this condition, there are no actual defects to the nerves or spine, but when the child witholds urine, it causes the bladder to react differently and extra pressure is put on the bladder which can cause secondary reflux. Unfortunately, many of these issues will not be detected until a reimplantation has failed. One important thing that you can do as a parent is to be hyper aware of your child’s bathroom habits. No fun, I know, but urinary retention and constipation have both been proven to slow the resolution of reflux as well as cause UTI. That’s a bad combination for any kid with VUR. Maintaining healthy bathroom habits may go a long way in avoiding recurrent UTIs and in possibly avoiding more difficult complications like Hinman-Allen.
Contralateral reflux has also been identified in rare cases when doing the reimplant on only one ureter. This does not happen often, but there are instances when a child only has unilateral reflux (reflux in 1 kidney), and has surgery on one ureter, only to develop reflux on the other, once healthy side after surgery. I haven’t ever seen a really good explanation of why this happens, but I would assume that it has something to do with the pressures in the bladder more than where the ureters are actually located. Problems with bladder pressure can cause a number of problems in the genitourinary tract, including reflux.
Megaureters also may cause some complications. In the majority of cases, if there is a megaureter present at the time of reimplantation, the surgeon will taper the end of the ureter making it smaller and less likely to allow the reflux of urine. If this is not done it may cause the reflux to recur after surgery.
I’m sure that there are some other more rare causes of failed reimplantations, but these are the major contributors. I would say that by far, the reason is usually dysfunction in either the bladder or bowels. The best thing that you can do as a parent is to be sure that you are familiar with all of the procedures, possible outcomes and alternatives available to you. If you feel like your child is having any trouble with voiding, whether it be infrequent, to frequent or other voiding issues, be sure and discuss it with your doctor before the surgery. If your child is dealing with any constipation issues, these need to be addressed and corrected before surgery.
While we don’t know for sure why our daughter’s reimplant failed, we do now know that she has some dysfunction in her bladder which is likely causing her continuing reflux. She has a grossly enlarged bladder (which we did not know before the surgery) and struggles with constipation on a regular basis. If it hadn’t been for these 2 factors, we might be in a much different situation now, but like they always say…. hindsight is 20/20. Sometimes there is nothing you can do to prevent a failed reimplant, but being diligent and making sure that there are no voiding issues may go a long way in ensuring a successful reimplant.
Stay tuned for my next post… What to do if you think your child’s reimplantation has failed.
Blogging again….
I haven’t blogged here in a while, so my first business will be to apologize to anyone that left a comment in the last few months, and I am just now responding. I have been trying a new blog format, and it hasn’t worked so well, so I’m back to the old tried and true. I do encourage anyone looking for information on kidney reflux to visit our web site at http://www.kidneyreflux.info
Maybe I spoke too soon
Poor Lizzie spiked a fever yesterday around noon, and started vomiting. Her temp was 102, so enough to be a little worried about 2 weeks after taking her off the antibiotics. When the fever didn’t go down over the next 4 hours, we called peds to decide if we could wait until today to come in (they have Sun hours) or if we needed to go in last night. We decided to wait and see if she still had a temp this morning, and if so we would bring her in.
This morning her temp was only 101.3, but we decided that to be on the safe side we should take her in for a urine culture. She seemed to be feeling pretty good at the doctor’s office and her fever was back down, so we when her urinalysis came back negative, I figured 24 hour tummy bug, false alarm. Woo-hoo!
The doctor (not our usual doc) gave us a script for Bactrim to take as a precautionary measure until the culture comes back, but we aren’t planning on starting it until we talked to our regular peds or uro tomorrow. I feel pretty strongly that if the urinalysis is clean, it’s not the kidneys, so the meds are pointless and a step backwards from what we are trying to accomplish. I didn’t bother trying to explain that to a new doctor, just nodded my head in agreement and looked compliant. 😉
Of course, the minute we got back from the doc her fever spiked again, and she’s had over 103 for the last few hours. I had hoped it would go down after her nap, but no such luck. I gave her some tylenol about an hour ago, and the fever seems to be gone (or low grade) for now. She feels much better since the tylenol, and even has a pretty good appetite. Since the urinalysis looked so good, I’m assuming it’s a virus of some sort and will run it’s course quickly. Regardless, I will be talking to both doctors tomorrow (especially since the concern about her immune system), so we’ll see what they have to say. It still surprises me at how stressed out I get when Lizzie boo is feeling poorly. I was really praying for an ear infection (I know…who does that?) but I like having an answer. This waiting and wondering stuff is for the birds, and fevers are the devil! 😉
Update on Lizzie Boo
Today Lizzie boo had an appointment with urology and we had another good visit. 🙂 We were really hoping that we would get the “all clear” for 6 months but I can’t complain about the 3 months that we got. Lizzie actually likes going to see her doctors and is incredibly patient with it all. She loves visiting the trains on the first floor of the hospital, and it’s a rare treat for mommy to hand out suckers willingly. She gets lots of attention, lots of stickers and lunch out with mom. What more could a girl want?
The big news is that we are taking her OFF of the antibiotics. She has been on them since she was 6 weeks old, and we’ve had mixed (mostly bad) emotions about the use of them all along. We are finally taking her off of them, and to be honest I once again find myself with mixed emotion. Both her pediatrician and urologist agree that there could be some type of immunity problem at work, due to her multiple and unusually persistent infections – first the UTIs and now yeast. Apparently it’s unusual to have 4 billion infections before you turn 2!!! lol We decided that changing her antibiotic would probably have little effect since she is currently on Bactrim which is not commonly known to cause yeast (especially at the dosage she takes).
The new plan is to take her completely off of the antibiotic and see what happens. The hope is that the antibiotics are to blame for the yeast, and that by taking the abx out of the equation, the yeast will go away. If it doesn’t help, then we will know it’s an immunity issue, and we will see the immunologist and have some new tests run. It might be better to go straight to immunology, but I hate to put her through more testing and more doctors unless I have to. This gives us an opportunity to get her off of the antibiotics (which we have wanted to try all along), and in the long run I feel like that is what is best for Lizzie. We can always put her back on them, but we may not have another chance to get off of them. If the yeast goes away we will know that it was caused by the antibiotics, and we can put the immunologist on the back burner for a while.
I am a little concerned about the chance of infection that this could create, but I’ve done a lot of research on the effectiveness of abx for reducing UTI and I’m not convinced that abx are at all helpful. They certainly didn’t keep her from getting the infections before the vesicostomy. I do worry about the fact that because she has taken them her whole life, that she has no natural immunity to any bacteria. I am glad that we are doing the trial in the spring and not the winter. Hopefully this will give her immunity some time to build before being hit with the nasty winter bugs.
We also discussed the time-line for the vesicostomy. Talk about a tough decision. He has given us the “go ahead” for taking it down at any time, which was a complete shock to me. The other urologist that we spoke with said his earliest recommendation would be age 4. Our current uro said that he would be willing to do it at any time, but that his recommendation was for sometime next summer… It was our decision. I laughed and said how about when she’s 10?
Are you kidding me? I can’t even begin to face the reality of taking out the vesicostomy… I’m so not ready! And I don’t think Lizzie is either. She has adapted well to it, and I think she needs additional time to grow especially now during a period we are pretty sure she will remain healthy because of the vesicostomy. The vesicostomy has kept her healthy and growing, and while we are completely optimistic, we have no way of knowing what will happen once the stoma comes out. She could be facing recurrent infections and more surgeries if things don’t go as we hope, so I’m ok with giving her some more time to be a kid.
The testing will start with another Urodynamics study (probably this fall or winter). This should give us 2 very important pieces of the puzzle….how big her bladder is, and whether or not she still has reflux. We are hoping that over time her bladder will have reduced in size and that the function will remain good. We can’t know all the details about the function until she’s older, but the test will give us a pretty good idea about what is going on and how it is going to work. I get the impression that they are figuring on the bladder still being enlarged, and we may end up having to catheterize her (at least temporarily) in order to keep her bladder empty. The problem with this, is that by catheterizing, we introduce bacteria into the bladder, which can often lead to UTI which will be dangerous if the reflux is still present.
So the second big question is whether or not she still has reflux. This is the most important thing, and the most worrisome. The urodynamics test won’t tell us the grade of reflux, but it should let us know if the reflux is still there. If so, it sounds like we will do another VCUG to determine the grade. If the reflux is gone, we are in really good shape. If the reflux is still there (especially if the bladder is still enlarged and the grade is high) she will probably be looking at an additional surgery, either another reimplantation or another Deflux injection. The risk of infection is just too high when cath’ing with reflux.
Which would take us to another hard decision that we hope we don’t have to make… do we do surgery A that already failed miserably, or surgery B that has also been a complete failure? Personally I am voting for letter C which assumes the reflux is gone and we don’t have to worry about it. 🙂 I suppose we will climb that mountain when we get there.
On a more positive note, her blood pressure was good today, which is a big step in the right direction. After getting the report from the Nephrologist, I still have some concerns, but we are monitoring it closely. The doctors feel she is at risk of hypertension, and it may be something we have to deal with in the future, but that we probably won’t have to worry much about it until possibly her teens (if we ever do).
The goal now, is to just have some fun and enjoy some time off. We got the ok for Lizzie to swim and play in the creek which will make for a really fun summer. The kids have been begging to get in the creek and this will be exciting news for them (especially big brother). We’ll of course be watching for signs of infection, but we feel pretty good about the way things are going, and we plan to just live it up this summer and be thankful that we can 🙂
Why National Kidney Month is so important to our family…
March is National Kidney Month, which makes it a very special month for our family. As most of you know, our daughter Lizzie has a condition known as kidney reflux. After a very difficult first year, Lizzie had her second major surgery on March 26, 2008… one year ago today. Thanks to a lot of prayer, great doctors and the research of places like the National Kidney Foundation, our daughter’s life has changed dramatically in the last year. This time last year we were desperate. Lizzie had been so sick her first year of life and due to a number of rare complications she was constantly cycling in and out of the hospital. She had already had one failed surgery, and our list of options was getting short. We were always worried about her health, and especially concerned that her kidneys were at risk of permanent damage from infection. After talking to her doctors, it was decided that she needed a more aggressive treatment, and she had her vesicostomy put in one year ago. It was the best medical decision that we could have made. Lizzie hasn’t had an overnight stay in the hospital since being released last March. Her kidneys are functioning well and she has remained infection free for an entire year! We have been so blessed. Lizzie still faces some obstacles in the future (but hey don’t we all?). She will eventually have surgery to take down the vesicostomy, and from there we don’t really know what to expect. What we do know, is that we are lucky to live in a time and place where medical advancements are around every corner, and because of this we have every reason to believe that Lizzie will live a perfectly healthy, happy life. We were extremely lucky to have found Lizzie’s condition early and aggressively treated it. She is growing well, developing well, and torturing big brother as well as the next kid, which is why it is so important to know the early signs of kidney disease, and what you can do to prevent it. I know most people don’t give much thought to their kidneys, but around here it’s a common subject. National Kidney Month is just one more chance for us to celebrate all that Lizzie has overcome. We spend a lot of time sharing Lizzie’s story with other parents and trying to raise awareness for kidney and urinary health. I figured most of you guys needed your awareness’ raised too 🙂 So, I encourage you to take 5 minutes and learn how you can help keep your family healthy and safe from kidney disease. I also encourage parents of young children to know the signs of a urinary tract infection and what steps you should take if your child develops symptoms.
For more information on Kidney Health and National Kidney Month: http://www.kidney.org/kidneydisease/kidneymonth/
For more information on Urinary Tract Infections in children: http://kidney.niddk.nih.gov/kudiseases/pubs/utichildren/
Update and Ramblings about Lizzie
Lately I have done a poor job of keeping my blog current… sorry. 🙂 In my defense, I am working on a new website (thanks to my dear hubby) complete with a new blog, articles and even a message board. Very exciting stuff. I am hoping to have it up and running within the next 2-3 weeks. I’ll keep you posted.
So, back to updating about Lizzie. Her Nephrology appointment went well. They took a very thorough look at her blood pressure, and found it to be within normal limits. It is much higher than average, but remains just within normal limits. So that was a big relief. I still have some concerns about her blood pressure long term, but I think we are in the clear for now. which is very good news. We will monitor her BP along with all her other stuff.
We did learn that one of her kidneys is working harder than the other 41%/59%, but together they equal 100% which is the goal. It is a little unusual (as most of Lizzie’s complications are) because there is no damage seen to either kidney, which makes you wonder why one kidney is not fully functioning. It doesn’t really matter since the other kidney is making up for it, it’s just another thing to add to the “weird” pile.
Overall a good visit. Not incredibly useful medically, but it gave me the reassurance that I have been needing. It’s just so hard to make decisions about your child’s health, and wade through all the medical stuff. I don’t know, maybe we didn’t even need the visit, but as her mother I am glad we went. I feel much better about her blood pressure with the lower scores and better testing. To me that means a lot… a whole lot.
Another plus was that the Nephrologist also strongly supports the idea of nutrition being an important part of her treatment, which I was glad to finally hear a Doctor say. Most doctors push another drug or treatment and never mention diet and nutrition. I don’t believe it can heal all things, but I think nutrition can support the immune system, help keep yeast under control – even with daily antibiotics, and overall just helps the body to grow healthy.
Over the last few years researching Lizzie’s condition and the health aspects of how the body functions, I have discovered a wealth of knowledge about food and how it affects the human body, including the immune system, the overgrowth of yeast, and constipation. All things that are major parts of Lizzie’s life. So more on that later… it’s a whole different post (or 2).
So we are back to the waiting game. Wait and see. I’m thankful for the chance to have some waiting time, but it doesn’t make the actually “waiting part” any easier. It is nice to have 7 weeks before another doctors appointment, so for now I will remain thankful for an infection free little girl and try to leave tomorrow for tomorrow.
Lizzie's Journey 