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
Hooray for Viruses!!
Lizzie is feeling much better today, so we are assuming it was just a virus. Hooray! We still don't have the culture back, but since the fever is gone and the urinalysis was clean, I think it's safe to say we're in the clear. It's just so hard not to stress out about a high fever when just a year ago a fever that high usually meant another hospital stay. I sometimes find it hard to let that part go and accept that she really is doing this well. It's the old bridge over troubled water syndrome. I know the bridge is there, and safe, but I can't help but see the water below and be afraid of what could happen. Anyhoo, little girl is feeling better, insisting on tea parties and torturing big brother, so things seem to be back to normal. Thank you for all the well wishes and prayers for Lizzie. You guys are great! Labels: sick, UTI, virus
Another long night
It's turned out to be a really long weekend. Lizzie is still not feeling well, and we can't really figure out why. :( Her fever spiked to 103.6 this afternoon, and I feel completely useless. If I keep her medicated with tylenol or ibuprofen, the fever goes down, and she feels much better... until it wears off. Then the fever spikes again, and again she is miserable. The weird thing is that she has NO symptoms. The doctor checked her ears, throat and lungs today and everything looked great. So where is the infection coming from? When she woke up this evening with 103 again, I broke down and called urology about the abx. I didn't feel comfortable giving her another high dose of abx under the circumstances, but I was completely second guessing myself (despite all my research) and needed some validation. The uro on-call agreed that the abx would be useless b/c the urinalysis was clean. Clean urine is clean urine, it's not the kidneys. Which is great!!! What a HUGE relief! But it still sucks that she is so sick with no clear reason. The uro doc felt I should contact the peds on-call tonight b/c she felt like a fever of 103.6 was concerning. Not necessarily dangerous (as she reminded me she wasn't a peds) but concerning especially with no other symptoms. So, I called peds back and lucky for me, it was the same doc I talked to yesterday, so she already knew the story. She said that it was a good sign that the fever was going down with meds, so she would let it run it's course for now. She said that we would probably see signs of some type of viral infection in the next 24 hours or so, but admitted it was a little strange to have no symptoms yet. We should call our regular peds tomorrow and let him know what is going on and that if by Tues there was still fever with no symptoms that he will probably want to do some testing. He may want to see us tomorrow, depending on how things look tomorrow. Labels: fever, signs of infection, UTI
The latest on Lizzie
It's now been 2 weeks since we took Lizzie off of her antibiotics. She is doing really well, and we are still keeping our fingers crossed that the results will be positive. She has had the one high grade fever, and a lot of low grade fevers, but that is not too unusual for her. Overall we are pleased with the results, and I love not having to give her meds every night. She has complained of her bottom hurting for the last 2 days, but I'm thinking that is more of a constipation issue than anything, so I just gave her a good dose of Miralax. It works pretty well for the munchkin, so I think that should take care of it. I'm just praying that is not another yeast infection coming on. We're still keeping her on the low sugar diet, and doing our best to prevent the yeast overgrowth, but only time will tell. Other than that, she is still growing like a weed. She is a bright little girl, and already knows half of the letters in the alphabet! I'm amazed at what she retains. Her favorite past time... getting dolled up and dancing around the house to any music playing. If there is no music, she makes her own. ;) As I type she is yelling "rock and roll, mommy! rock and roll!", so I'm off to have another dance party with the kiddos. I hope everyone's babes are doing well! Labels: antibiotics, update on Lizzie, Vesicoureteral Reflux, vur
Feeling better today :)
Lizzie seems to be feeling better today. Still a little off, but her fever is down, so I feel pretty comfortable just watching it and seeing what happens. I'm figuring it's just a virus, so hopefully she'll be feeling even better tomorrow. I wish it would stop raining so that the kids could get out and play. I know this weather is giving me cabin fever, so I'm sure Lizzie feels it to. We were able to get out and take a walk today with big brother, daddy and Chip (our new dog) so that was nice. Anyway, just wanted to update after last nights worried post. Hope everyone is doing well!!!
A Long Night
So tonight I've been a little worried about Lizzie. She had a very emotional and needy day, and just didn't seem herself. By this evening, she had a temperature of 102 F, and it's making me a little jumpy. Normally a fever of 102 brings a little concern and a lot of watching, but I don't usually get that worried, nervous feeling like I used to. She hasn't had a UTI in a year now, since her vesicostomy surgery, and we've kind of taken it for granted that we've moved on from the constant infections. Nothing like a good ole rude awakening. Lizzie has been off of her antibiotics for 5 days, so my worry level is already on high alert. She probably just has a virus of some sort, but her timing is impecable. If her fever is high in the morning we'll call peds, and I'm pretty sure they will have us bring her in so they can cath her and get a urine culture. Another benefit to the vesicostomy.... cath'ing is much easier through the belly! I always hate being in this situation. You know the one, where half of your mind says your crazy for being worried, and the other half thinks you should freak out immediately. I can never figure out which side to listen to... they both have such good arguments. Hopefully the fever will be down in the morning, and I won't have to pick sides. Labels: fever, high fever, signs of infection, Urinary Tract Infection, UTI
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
The New Site...
I'm excited to finally be launching the new web site! I've spent a lot of time over the years doing research about various things related to our daughter's condition (Vesicoureteral Reflux), and over time, I ended up with a ton of bookmarks and good information. I am using this site as a way to pass on the information that I've learned, and hopefully it will become a community where we can share our journeys and learn from one another. I have to admit that I am a poor blogger. The previous posts here have come from other various blogs that I've had, so it's a little dis-jointed. I can't guarantee it will be any more cohesive from here on out, but I'll try. Blogging is a lot more personal... and frankly, we're just not that interesting! LOL But, I am going to try. The plan is to blog about some daily life, but I'm sure I will often go back and talk about different periods in our journey. So be patient.... and wish me luck! :) (and why does that smiley look so sinister?) Labels: blogging, New Site
Why National Kidney Month Means so Much 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/
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Lizzie's Journey
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