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 :)
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/
We were really surprised when the urologist told us that Lizzie needed a vesicostomy. I had read that in rare cases, when there are complications to VUR, a child might need a urinary diversion, but I never expected Lizzie to fall in that category. I needed to know more about what cutaneous vesicostomy was, and how it could help my daughter.
A cutaneous vesicostomy is an opening in the lower abdomen which allows urine to continuously drain from the bladder. A small incision is made into the abdomen and into the bladder. The surgeon will take the edge of the bladder and turn it inside out, and then sew it to the skin of the abdomen. It is a small incision, about an inch or so below the belly button, and the opening is called a stoma.
A vesicostomy is a procedure that is usually done in infants and young children (usually under 5 yrs), but can sometimes be an option for older children and teens. This type of stoma does not require any type of equipment or bags. The urine will drain directly from the stoma into the child’s diaper. A vesicostomy is a temporary urinary diversion, which means that is easily reversed in the future, which makes it a good option for children.
So why would a child need a vesicostomy? Some children are born with or develop an obstruction in their urinary tract. This may include children with posterior urethral valves, vesicoureteral reflux, or neurogenic bladder. The vesicostomy will help prevent urinary tract infections, and kidney damage.
For Lizzie, the vesicostomy has reduced her UTIs, as well as the pressure that builds up in the bladder. We are really pleased at the success of the surgery. Lizzie went from having a kidney infection every single month, to not having one in the past 8 months. It means that she is finally healthy, which in turn means less hospital visits, less doctors, and less meds.
Studies have shown that a vesicostomy can help maintain renal function and prevent damage. Because it is easily reversed, it can be taken down when the child is older, or in a better position to receive other treatments. It has proven very effective in preventing UTI and preserving the bladder.
The surgery is done with general anesthesia, which means your child will be completely asleep during the procedure. The surgery will generally last about an hour, at which time your child will be taken to recovery where you can be with them. Your hospital stay is usually 1-2 days. A catheter may be placed in the new stoma, or the urethra (or sometimes in both, which was the case for Lizzie). The catheter can usually be removed in the first day, but may need to stay in place 2-3 days.
Care for a vesicostomy is pretty basic. You may need to dilate the stoma to keep it from closing. This requires the insertion of a catheter into the stoma to stretch it out. This is often done 2 times a day. For the first week or so, you will keep an antibiotic ointment on the incision to prevent infection, and your child will be prescribed an oral antibiotic as well as pain medication. Your child’s diaper should be changed frequently to prevent skin abrasions from constant wetness. You may want to use Vaseline as a barrier to protect the skin if needed. We have also found that because of Lizzie’s daily antibiotics, yeast infections have been a struggle with the vesicostomy, and at times a barrier cream has helped with the rash.
After the surgery, you should call your doctor immediately if any of the following occur:
- If no urine has passed through the stoma in 2-3 hours
- Foul smelling or discolored urine
- Tearing or significant bleeding of the stoma
- Fever over 101.4 degrees F
Diapering a child with a vesicostomy can sometimes be tricky, and we have found it to be the most difficult part of the vesicostomy. For more tips on diapering, and keeping your child dry, please click here.
Thursday Lizzie had an appointment with urology. I always dread them, and was expecting another appt where I would walk away with more questions than answers, feeling frustrated and sad. Much to my pleasant surprise, I walked away feeling encouraged and strong. For the first time, I feel like we sort of have this under control. Lizzie has been infection free for 6 months, and I feel like we are finally getting a handle on this thing. We still don’t know what this “thing” is, but I’m beginning to understand that we may never know, and that is finally starting to be ok for me.
So here is the progress report:
Kidneys still look good on ultrasound. There is still some swelling in the left kidney (hydronephrosis), but uro is not concerned about it at this time. Blood work looks good, she’s already on antibiotics, and the vesicostomy is keeping the kidneys safe, so for now, no worries, which is good news.
As for the antibiotics, she is still having to take them daily, despite gut and yeast issues, but we have realized this isn’t a fight we will win easily. Too be honest, since she’s been healthy for almost 6 months, I might be afraid to change anything anyway… despite how much I hate the antibiotics.
So now what? Now we wait. Assuming there are no other problems or infections, the plan is to wait 2 years and then take down the Vesicostomy. In order to take it down, we will have to make sure that the Deflux has corrected the VUR (or at least Greatly reduced it), and that the bladder is/can function properly. We will do a VCUG to determine the VUR status, and may have to repeat the Deflux surgery before reversal. We will also do another urodynamics to test the bladder, as well as blood tests, and a DMSA scan.
Once we’ve gotten through all of that, we take down the vesicostomy, cross our fingers, and jump straight into potty training. It will be a rigorous schedule of physically training the bladder, so she needs to be old enough to understand the concept, and get it quickly, which is why we are choosing to keep the vesicostomy so long. Once the vesicostomy is down, she will go from urinating through her belly, to being a “normal” little girl. I can’t imagine how strange that will be for a 3-4 year old. We are hoping to be potty masters so quickly and efficiently that we don’t have to catheterize, but we realize that when you have a ginormous (it needs it’s own word! lol) bladder that you might not feel, and you’ve never really used your hoo-ha, there might be some issues.
If all else fails, and she continues to get infections, we can always put the vesicostomy back in, so we have options. They are not our favorite options, and we feel confident that if anyone can do it, it will be Lizzie. I’ve learned that no matter what, Lizzie will be fine… better than fine. She is a fighter, and a truly amazing little girl. She has surpassed everyone’s expectations in growth and development, and she continues amaze us everyday.