Lizzie's Journey
Potty Training...Lord help me!
Lizzie is showing a real interest in all things potty related. Lord help us all. Too be honest, I've overlooked a lot of the signs that she was interested, but when she started pulling down her pull-up and yelling "look I peepee!" and clapping for herself I figured the time had come. This of course presents a major problem.... How do you potty train a child with a vesicostomy? Really, you don't. BUT, we can encourage her when she takes initiative and give her the tools to be at least somewhat successful in her own little way. And don't think the irony of having a 25 month old wanting to potty train is lost on me. It's not. I felt like our older son might start college in diapers. He showed no interest whatsoever until he was at least 3, maybe even older. No such "luck" with Lizzie boo. Our solution so far is to let her stand and pee like a little boy would. It's a little different, but it works for her, and talk about instant gratification! lol The kidneys are always draining into the bladder (she drinks non-stop - all day), and because she has a cutaneous vesicostomy, it also drains continuously. All she has to do is stand on her stool facing the potty, and pull down her pull-up. She is able to go anytime she wants, which is pretty convenient. This method has its pros and cons. I do worry a little that this will make things more difficult when we get the stoma out since she will have to re-learn how to use the potty. But on the flip side, she will be learning to go in the potty, and understand the concept of going, flushing, and washing your hands. Who knows? We're also considering getting some of the pouches used to get a urine sample at the nephrology office. By putting them on her abdomen, over the stoma, we could allow her to sometimes sit on the potty too. Then we could empty the pouch into the potty, and we would have the same basic outcome. That way she kind of learns both ways. It would also be a big bonus if we could get her Miralax timed right and let her sit on the potty to poo. Ahhhhh. The things that bring a mother joy! In reality, this is another one of those gray areas that doesn't have a right answer. What I don't want to do is discourage her from doing something that makes her happy and gives her some sense of normalcy. I am not actively encouraging it, I'm just following her lead. Too be completely honest, I hope that she will lose interest soon, and we can wait another 6-10 months before encouraging her to try again. I suppose we will find out soon enough, but until then it seems to be good for her self esteem and that makes it good enough for me. Labels: Diapering vesicostomy, Potty training
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 Labels: antibiotics, April, Diapering vesicostomy, Lizzie, take down, Update, yeast
Diapering a Vesicostomy
A lot of people have asked me how we keep Lizzie dry while she has her vesicostomy. Too be honest, there are a lot of times that we don't, but we keep on trying. :) Keeping Lizzie dry is sometimes a challenge. Sometimes we win, and sometimes not so much. Here are some of the things that we have learned along the way. Lizzie got her vesicostomy when she was 11 months old. We had no idea what to expect at first, and it was pretty overwhelming. She stayed wet all.the.time. She was nursing constantly, and we were going through tons and tons of diapers. I was losing my mind, and we needed a better solution, and quick. So I busted out the old sewing machine and started a game of trial and error. What I came up with was kind of like a diaper belt if you can imagine such a thing. It basically consisted of a cloth diaper rectangle in the front (the buckle if you will) that was held in place by using velcro to attach it to an ace bandage. So the bandage goes around the back, and velcros to the cloth on each side. Here is a link to an old blog post that shows you how I made them, and has some pictures to explain what I'm talking about. This first solution worked great for a while. It was excellent to use while she was small, and not as mobile. It also worked well with breastfeeding because I knew when and how much she was taking in, so I could kind of judge after a while how much would come out. The front cloth was easy to change, and easy to wash so it was pretty successful for a few months. I met recomend tyring it for an infant or small toddler. The problem was taht after a while she got pretty mobile, and once she started drinking on her own, there was a lot more urine output. She was soaking through the inserts and leaking quite often. We fumbled around for a bit, and then turned to pull-ups. We chose a size larger than she would normally wear and then we took a small (size 1) diaper and turned it inside out and tucked it in the front of the pull-up. This way we could easily change the small diaper insert without having to change the pull-up as well. This would also work with a cloth insert, but we chose to use disposables at this time because of chronic yeast infections. It is a little bulky, but we avoid stretchy material on clothing, and use a onsie to kind of hold things in place. This has been pretty much what we have stuck with. As she gets taller, this becomes a little less ideal, because we need larger pull-ups, and they aren't tight enough for her legs which have thinned out as she has grown. We do have some issues with the leg holes being a little too big to keep everything in sometimes, but for the most part it is manageable. For us, this system keeps her the driest overall, and we are able to use the same pull-up for a number of changes if we keep the little diaper changed often. The most helpful thing that we have learned so far is that onesies are a necessity. They keep everything in place, and prevent little hands from pulling out inserts. It also helps keep little hands from trying to put things IN the stoma too! We have found that for us personally, pants are not a good option. They tend to irritate her abdomen, and sometimes actually cause the insert diaper to pop out or push down. We continue to try periodically, but it never turns out well, and for the most part we avoid anything that is tight around the middle. Until recently this has been pretty easy to accomplish, but I am finding again that the older she gets the more difficult it becomes. It's really hard to find one piece outfits in size 3T, although I have found 3T onesies online, which is very helpful. We can do dresses as long as we have the onsie to hold everything in. I was also excited to find onsie extenders, which is just material with snaps on either side to extend the bottom of the onsie and make them longer. Something else that we found useful for a while (although not so much lately) was that she sometimes stayed drier at night if we put a Goodnites or Large Sleep diaper over her regular pull-up and insert. It's kind of a trial and error type thing, and you just have to keep working at it to find what fits best with your child. Another helpful hint for night-time is to layer your bed sheets on the crib. Lizzie is almost always wet through the night. Most nights she will sleep through, but many nights she wakes up wet and needs to be changed. I find it helpful to have all my "supplies" handy, new PJ's, wipes and diapers, so that I can quickly change her without turning on the lights. As for the sheets, I have them layered with a sheet, then one of the crib mattress covers and then another sheet. When she is wet in the night I am able to remove the top sheet and mattress cover, and still have a dry sheet underneath. I can even do most of it one handed now :) The things that we are proud of! LOL! But really, the more quickly I can get her dry and back in bed, the more quickly we can both get back to sleep. If she get good and woken up, it can make for a really long night. So that's about it. I wish I had better answers, but we get by pretty well. We change her often and always carry extra clothes. It's not a perfect system but it works ok for us, and we continue to learn as we go. Hope maybe this is helpful to someone, if anyone has any suggestions...I'm all ears! :) Labels: Diapering vesicostomy, special needs diapering, Vesicostomy, Vesicsotomy care
Belly Bands/Belts for Babies!
 So here we go….. Belly Bands/Belts, for kids with vesicostomies. When we got home after Lizzie’s vesicostomy surgery, we were a little overwhelmed to say the least. We had trouble diapering her at the hospital with the help of the nurses, what in the world were we going to do on our own? If we put a larger diaper on her, she leaked out the bottom. Doubling up on diapers was costing us a fortune, and our baby looked like the marshmallow girl. I couldn’t believe there was not a better solution out there, so I jumped on the old computer. Surely I could find some information on the internet…. guess again! Talk about frustrating! I knew who, when and what Brittney Spears had for breakfast, and how to enlarge my penis (if I had one), but there was no good information on how to care for, and diaper a vesicostomy. Luckily, necessity is the mother of invention, and I spent a lot of time trying to come up with a way to cut down on the number of diapers, and help in the way of convenience. So we came up with the Belly Band/Belt idea for Lizzie, and I decided that I needed to share what we have learned with you. If you have any questions or suggestions, we would love to hear them! So here we go. These bands are easy to use, easy to wash and pretty easy to make. I am not a seamstress by any stretch of the imagination, so don’t laugh at my craftsmanship. On the same note, If I can make them, you can make them. Here are all the supplies that you need (fig1): Sewing Machine/Thread Cloth Diapers Ace Bandage (I use 3” for day and 5” at night) Velcro Double Fold Bias Tape (I used 7/8”) Ribbon (Optional – I used .375”) Scissors So let’s get started. T ake one of your cloth diapers and make your cuts (fig2). In the pictures I used a 3” ace bandage, so I cut my diaper strips 6” each (they will be folded over for double absorption). Each diaper will make 3 belly bands at this size. After I had my strips, I trimmed 2.5” on each side of the diaper. You may want to lengthe n or shorten this number depending on the size of your baby. I used 2.5” on this set, but I may try 3” on the next round and save these until she is a little bigger. Once you have your band cut, fold it in half and pin it. Cut your Bias Tape and ribbon (if using) the same length as your band (fig3). Next you begin sewing. I started by sewing the diaper at the top edge to help reduce fraying. Ne xt I placed the bias tape over the edge, and sewed it onto the band. I then placed the ribbon across and sewed it in place (fig4). Now we tackle Velcro. Turn the band over to the back and fold over the edge, and place the Velcro on top of the fold (fig6 ). You will sew the Velcro on both ends of the band (in the back). Be sure and use the softer side of the Velcro, it washes better and doesn’t stick to all of your laundry. You now have the front piece of your Belly Band complete! For the stretchy part in the back, we used an ace bandage. During the day I use a 3” bandage and at night I made a bigger front section (5” when finished) and I use the 5” ace bandag e. Trial and error may help you decide what size you need. We chose the ace bandages because they are stretchy, soft and can be washed. We simply cut them to the desired length (I used 10.5” for Lizzie) and then folded the edge over and sewed a piece of Velcro over the fold. Do this on both edges using the rough side of the Velcro (opposite of the front section). This becomes the back of your band (fig8). Now you are ready for action! Just connect the Velcro of the two peices (fig9) on one side and place the bandage under baby. Then just connect the other side (fig 10, fig 11). Put a regular diaper on over it (fig12) and you are ready to go (fig13). Keep in mind these pictures show the band I just made. Washing them makes them much less stiff and a whole lot softer, and more moveable. When it is time to change her all we do is replace the front piece with a clean one, and attach it to the same bandage section. I have noticed that th e bandages do tend to stretch out some after a few days of wear. You can make 6-7 bands out of each ace bandage, so you may have to replace them every other month or so. At least they are pretty inexpensive and very easy to make. So far these have worked out great for us (almost a week now). They have cut down the frustration of leakage, and the cost of double diapers. They  have held up well during many washes and wears and they seem to stay in place great. I love that it moves with her, so she can bend and play, but it still stays where it belongs. So far we have had no major leaks even during changes. It makes changing a dirty diaper so much easier because it stays in place to cover the vesicostomy so she is not leaking as I am changing her. I think it would have been very helpful when she was hook ed to the IV and has constant heavy leakage. So there you have it…. the Belly Band/Belt for babies. Labels: Diapering vesicostomy, Diapers, special needs diapering, Vesicostomy, Vesicostomy care, Vesicoureteral Reflux
Today was Lizzie's Urodynamics Test....
Today Lizzie had her urodynamics test, and she amazed me as always. She is so patient and so tough. I am trying so hard to follow her example! The test we had today shows how the bladder is functioning and if there are any problems with the pressure in the bladder or voiding of the bladder. They decided that we should do this test to see if Lizzie's reflux is being caused by the bladder instead of the ureters. We dreaded putting her through another test, but were hopeful that we could finally get some answers. During this test they slowly inject a solution into her bladder. She was such a trouper. She laid still on a table for an hour with two catheters and a full bladder. I'm not sure I could have done that! She hardly even fussed. Don't get me wrong, she made sure we knew she didn't appreciate it, but once she made her point she was very patient and continued to be her sweet happy self. I was able to hold both of her little hands through the whole thing. Going into the test we knew that her bladder was enlarged, but we really weren't sure what that meant. During her test we realized that her bladder is so enlarged that they were able to inject three times the amount of fluid that it should hold before they decided to quit. Unfortunately the test can't tell us why. Her pressure, however, looked constant and even, which was a good sign. The anticipation going into this test was that the bladder would not void entirely and that would be the problem. If the bladder doesn't void completely, then the urine, along with it's very good friend bacteria, hang out and simply move between the bladder and kidneys without ever fully leaving the system. This causes the infamous kidney infections. During the test we discussed our options with her urologist, and decided that the safest, most effective way to keep her healthy and protect her kidneys is a vesicostomy. A vesicostomy is a procedure where they make a small hole just under the belly button so that the urine can drain directly from the bladder through the incision. The reason for doing this is to keep the bladder empty at all times so that the bacteria can't grow and move into the kidneys. Our main goal is just to keep her kidneys protected, and this seems to be the best option for doing that. We also decided to go ahead and do the injection of a bulking agent into her ureters (Deflux) while she is under anesthesia. The bulking agent will help to make the space in the ureters smaller and hopefully help to reduce the reflux. At the end of the test they check the voiding of the bladder which we expected to be very poor. It actually turned out to be pretty good. This meant that the doctor would leave the decision of the surgery up to us with his very high recommendation. Due to the fact that there was still a small amount of liquid left in the bladder and based on the ineffectiveness of the antibiotics, we have decided that the vesicostomy is still the safest road to take. Her doctor thinks that this should stop the infections completely for as long as the vesicostomy is in place. It is just a temporary step in a long process, and we will keep it in for 12-18 months. The hope is that we can get her healthy and keep her healthy and hopefully her body will heal. This procedure will in no way cure her but it should keep her kidneys healthy and keep her little body free from infection. I can't even imagine what that will be like! If it doesn't keep out the infection, we will know that her problem is with the immunity system, but we are hopeful that we never have to worry about that. Her surgery is set for March 26th, just 3 weeks away. I am already so nervous. I hope we are making the right decision, and hope that we are able to have our little Lizzie healthy for the first time. I am really excited at the prospect of Lizzie being healthy for 18 months, but I am also concerned. It's just a temporary fix, and when it is time to take it out we will still be faced with the unknown. We still don't know what the problem is or how to fix it, but for my own sanity (what's left of it anyway) I just have to get through this and worry about the rest when the time comes. Just take it one day at a time and be grateful (and hopeful!) that we have a chance for 18 months of health. Labels: bladder test, Diapering vesicostomy, enlarged bladder, Urodynamics, Urodynamics test, vur testing
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Lizzie's Journey
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