Lizzie's Journey

Lizzie's Journey - A video montage

noreply@blogger.com (Wen) — Thu, 22 Oct 2009 18:23:00 +0000

Just wanted to share Lizzie's Journey in pictures....

Kidney Reflux Video

Who knew?

noreply@blogger.com (Wen) — Sat, 19 Sep 2009 04:42:00 +0000

Lizzie has been doing pretty well over the last few months. We've had a lot of doctor's visits, and a few viruses along the way, but overall she' been doing great. She's a wild child and she keeps us on our toes. Big brother is also doing well. He's in the first grade now, and doing great in school. I've been amazed at how well behaved he's been lately and how amazingly fast he is growing up. We've really enjoyed the beginnings of fall. Fall for us means less time that mom has to spend farming and more time hanging out with the kiddos. The farm keeps me incredibly busy during the summer, and I love the time I get to spend with the kids on the farm, but I'm always glad to see the season coming to end.

As for medical stuff, Lizzie has been having some urinary pain for the past few weeks, and I'm hoping that today we worked it out.... literally. Lizzie has been constipated for a week. It had been 5 days since her last bm, so (per doctors orders) we spent yesterday shoveling Miralax down her with no results. We think that the constipation might be causing bladder spasms, so its important to keep her moving. Well, I'll spare you the details, but today things really started moving.... and moving.... and moving. Yeah you get the picture. Lesson learned - if you give your kid half a bottle of Miralax , expect to stay home for a day or two!

Speaking of changing diapers, I have 2 exciting diapering issues being solved this week! We are having custom cloth diapers made for her vesicostomy, and I found a simple pattern to make baby legs so that Lizzie can actually wear dresses this winter! I'm totally excited about them both! And just in time for cold weather. I'll share more about them tomorrow.

Testing 1...2...3

noreply@blogger.com (Wen) — Fri, 04 Sep 2009 03:18:00 +0000

Yesterday we got the results from Lizzie's last round of testing, and I must admit that I am a little discouraged. I shouldn't be. When all was said and done, most of the results were really quite good, but it's just the lack of answers that gives me such frustration. I was just saying last night that no matter what we found out, at least we would have something concrete to go by....

Who was I kiddin? Lizzie had other plans!

Lizzie's original testing showed no response to Candida or Tetanus, so they decided to do some more specific testing this week. The tetanus titers came back this round with some response. It's not an outstanding response, but her body is at least responding to the antigen which is good. Candida (yeast) on the other hand still has no response at all. Her skin test was completely negative. The doctor said she had never seen it, and it makes no sense considering how good her labs have been.

The good news is that because the labs are so good, and because she has been infection free for a while, we've been granted some time. We're officially back on the waiting wagon. My least favorite place to be... and yes, I will have some cheese with my whine! ;) We do have some more testing that we will need to do, but our doctor is letting us do it at boo's pace (based on her regular vax schedule and blood work schedule) which is great, because that means less "sticks" for Lizzie. Have I mentioned we love our new doctor? She's great! The hope is that Lizzie can remain infection free, and that her immune system will mount a response on it's own over time. If she gets another infection, the plans will change, but let's just hope we don't need to worry about that.

Once again my sweet little angel is making her own way. She continues to grow, develop and surpass all of our expectations in spite her "uniqueness". She's a healthy little girl with a funny disposition, and that's the bottom line. That's all that really matters. It's so easy to get caught up in the medical mumbo jumbo, but my frustrations and discouragement aside (which is no easy task, believe me!) at the end of the day, I know that I am truly blessed. God has big plans for that little girl. Teaching me patience is just the beginning! :)

The waiting game is over,,,,, or so we thought

noreply@blogger.com (Wen) — Fri, 28 Aug 2009 04:59:00 +0000

I never know what to expect with Boo. If anything, I’ve learned to expect the unexpected, but sometimes you’re still blind-sided. It just happens, and today was no exception. We were anticipating excellent test results from Lizzie’s most recent blood work. She’s been infection free for a while, and the initial testing was optimistic. Both of her doctors seemed pretty confident that the results would be good, and we had immunology just about crossed off of our list when… we got the curve ball.

Lizzie’s immunoglobulin numbers look good, which is great. Her T cells and B cells are both making cells and responding to some infections, but apparently her T cells are not functioning as well as we had hoped. Once again Lizzie is odd man out. Her T cells are not making any response to Candida, which is highly unusual without the presence of certain conditions (which she doesn’t have). This would explain the thrush and yeast infections, but we still aren’t sure why it would be happening outside of those conditions. Chalk it up to another 2% that Lizzie is a proud member of! Lol! So our first step is to have some more testing done next week to see if we can find some more definitive answers. The last test was done with cells in a petri dish, so this time, they will test her skin directly, and she will receive a “patch” that she has to wear for 3 days. This will test how the cells in her body actually respond to the candida. She will also have yet another blood panel to retest her latest results. After that we will move on to the vaccination titers which I am still not happy about, but I am now at least comfortable doing because I know that they are necessary.

So how do I feel about it all? Not really sure yet. On one hand, I’m excited to have a wonderful doctor that listens, explains it all and is willing to look for answers. I can’t say enough about how important that is. I’ve always felt like all of Lizzie’s issues are connected, and I think this is one more step in connecting them all. I truly feel like one day we will find the answer. On the other hand, I’m so frustrated. I’m really tired of taking my baby to be a pin cushion. I’m tired of doctors not having answers. I’ve talked to dozens of doctors, done literally hundreds of hours of research, and I know less now than I did when she was 6 weeks old. I’m tired of my baby being “special”. I’d give anything for her to be boring, dull even….

And then I’m reminded of how blessed I am. I have 2 amazing children, both of whom are happy and very healthy considering. No matter how frustrated I am, that’s a pretty big wake up call. It’s like a dear friend of mine said tonight “You’re entitled to the pity party every now and then, you even deserve it. Just don’t ever let it cloud your blessings”. What encouraging words. I do get tired of being the rock, I won’t lie about that. Sometimes it helps just to say “this sucks”. Cause guess what? It does. It’s not fun to see your little one go through so much. But then you pick yourself up, say a big fat thank you that it’s not worse, and move on. If it ends up being a true immune deficiency, Lizzie will be put on another medication to control it. Not our favorite option, but yeah we’re pretty thankful to have the option. Modern medicine is both amazing and frustrating. My goal? To find a balance between the two. Yeah, God’s definitely determined to teach me patience.

Good News and Good Docs

noreply@blogger.com (Wen) — Wed, 12 Aug 2009 18:14:00 +0000

Today Lizzie saw her new pediatric immunologist, and I'm glad to report that the visit went really well. I never know what to expect from a new doctor, and let's be honest, it doesn't always make for a good day. We've had some initial test results for a while now, with no clear explanation of what they mean. For those of you who know me, you know that it's been driving me nuts!!! Super crazy, so I was really hoping for a good doctor who doesn't mind 1000+ questions. Instead, I got 2 great doctors that welcomed the questions. Thank you Lord for teaching hospitals! lol!

The doctors didn't get copies of all the right labs, but if I've learned anything along our journey, it's to be over-prepared... so I had a copy for them. :) They went through the labs with me item by item, and explained what each one meant. The good news, is that because she is growing and developing so well they feel like her immune system just needs some time to "catch-up". She has spent so much time on antibiotics and anti-fungals, that her system is just overworked. We are pretty convinced that this is what is making her T cell numbers low, and not an actual deficiency, but we are doing a few more tests to be sure.

Speaking of tests, more good news... I think we made the right decision in waiting to do the vax titers. We are redoing the original labs to see if the numbers are still low, but since she has been off of all medication for 8 weeks now (which also means she has been thrush free for 8 wks! woo-hoo!) we may see a rise in her numbers. They are also doing some kind of test to check the actual function of the T cells. As long as the T cells are functioning well, it doesn't matter if they are lower than normal as long as they are not significantly lower. If this test comes back with good function, than we don't have to do the titers at all, which would mean no extra vax'es. Which makes me one happy momma!

So overall great news. It's not definitive and really not anything we hadn't heard, but now I understand it and feel comfortable about where we are going. Sometimes that's just as important as the answer. It certainly takes a lot of the worry out of it. We get the test results in 2 weeks, and hopefully we can take immunology back of the list. This will also mean that we are doctor free until December! You heard me right, NO visits scheduled until December, when we see urology again to discuss the take down of her vesicostomy. It will be a nice break before she starts testing again, and I'd say she deserves it. ;)

Round And Round We Go

noreply@blogger.com (Wen) — Wed, 01 Jul 2009 02:03:00 +0000

Today's immunology visit did not go quite as I had expected. I was pretty confident that all the results would come back normal, so when they didn't I was a little blindsided. Too be honest, I'm still not sure what to think, but mostly because no one has told me what any of it means.

Unfortunately, due to a scheduling problem, the doctor wasn't even there today. Needless to say, I was seriously annoyed that I had just driven over an hour to discuss test results with a doctor that wasn't even there, but for the sake of being polite, I will keep those thoughts in my head. :) Instead I saw the nurse practitioner, and as nice as she was, she really didn't have many answers about the tests.

She showed me the test results, and explained how some of the results came back lower than expected. I expected there to be one or two items off, but was surprised when there a quite a few low numbers, some of them significant and some only slightly lowered, with about 25% of the numbers below normal - which also means 75% were normal... :) see that silver lining? lol Apparently low is better than high, which is good, but I still don't know what it means, and she either didn't know, or didn't want to discuss it with me since she wasn't our doctor. She called the doctor who said that he did want to see us, and that we needed to do some additional lab work. He had mentioned from the beginning that we might be doing more testing, so I'm not sure if it is because of the results or in addition to them.

After she spoke again with the doctor, she said he wanted to run some new blood work today to test her titers, then give her 2 vaccines, and re-test her titers after 2 weeks. We worked out a compromise so that we would do labs today, and then I could have her pediatrician give her the vax'es on Thurs. Then we would come back for test results and re-testing in 2 weeks. This way, I have some time to research, and it also gives me a chance to discuss it with my pediatrician before we make a decision. We also see our urologist Thurs morning, which is a bonus, so I can discuss it with him as well. As many of you know, I am not a huge fan of vaccines, and because of Lizzie's constant illnesses the first year, we are on a delayed vaccination schedule. So you can imagine my lack of enthusiasm for this method of testing. I will absolutely do it if it needs to be done, but I can't take the word of one doctor that I can't even get in to see... if you know what I mean. I need to know what giving a vaccine to her if she is immunocompromised might mean. I need to at the very least understand it, and at the most just be ok with it.

So now it is time for lots of research, and time is a big factor... which stinks. I hate to be rushed. If any of you have done any medical research online, you know that Dr. Google is full of gloom and doom, and you have to be careful how much you read. It takes time to navigate through it all without being totally overwhelmed, especially when you are as clueless about a subject as I am this one. I just didn't expect to be here. And now that I am, I have some catching up to do.

At this point, we really know nothing. We don't know what the tests mean, or how concerned we should be about them. She's only 2, so her immune system is still developing and may still make some adjustments (especially now that we are off the abx) or we could be facing something more serious. We just don't know right now, and man that is hard. I think that is always the hardest part for me.... the not knowing. My imagination is sometimes much harder to live with than the truth. I long for the day that we can say X is what is wrong with Lizzie, but I also have a lot of fear about what X will be or what it will mean for her future.

The good news is that she is still growing and developing well, and that gives me all the hope in the world. She is a healthy, happy little girl, so I still feel really confident that in the end this will come out with positive results. Maybe it is just God's way of teaching me a little patience ;)

Moving Right Along

noreply@blogger.com (Wen) — Mon, 29 Jun 2009 04:00:00 +0000

Things around here have been medically dull, which makes me incredibly happy! We've had 2 normal weeks with no doctors, no fevers and no thrush. Oh happy days!!! This week it's back to the grind, with a few doctor's visits scheduled, but we are expecting all good reports. If everything turns out as planned, we are hoping to get a 6 month all clear. *crosses fingers* We've never been more than 12 weeks without some type of appointment, so 6 months would be pretty cool. I'd love to be able to give her an extended break before we start over with all the heavy duty testing next spring.

I really enjoy talking with other parents, and by doing so, lately I've realized how truly lucky we are. I hear so many parents talk about the fears that their children have when undergoing procedures, and how traumatic doctor's visits can be. I'm so thankful that Lizzie doesn't have those fears. She loves her doctors, and it has simply become a part of her life. Too be honest, her "medical expertise" has brought a lot of humor into our home. Here's a few examples:

Lizzie got a toy medical kit recently, and man has she had a ball. The very first day, she got it out and immediately went to work "doctoring" herself. I watched her giving herself a shot, and was amused when she kept pushing it over and over. A minute later she brought it to me and said, "mommy this one's broken, it not work", I said sure it does, and I pushed it in and out and showed her on my arm. She tried again, and said, "nope this one don't work, it don't hurt the baby. I throw it in the trash.". LOL! I'm not sure what was funnier, her distaste for a shot that didn't hurt, or the fact that she was intentionally trying to wound herself with a toy shot.

We live in the country, so we don't see a lot of suit and ties around these parts. When big brother put on his tie for a date night with mom, Lizzie jumped up and down clapping saying, "look brother's a doctor!". Now anyone in a tie is a doctor, and she insists on wearing one herself when playing with her kit.

Last week she discovered that her bunny rabbit had no belly button. She immediately ran to get her medical kit so that she could do "surgery" to fix this problem. I asked her why he needed a belly button, and she informed me that "he needs to go pee-pee mama". Talk about bitter sweet. I loved watching her interact with that bunny, assuring him that it would only hurt for a minute, and that she would make him all better. Not only does it remind me of what she has been through, but it also shows me a glimpse of who she will become. She will understand that everyone is different and wonderful in their own way, and that we should offer comfort to the people in our lives. What an amazing thing to be able to pass along to your children, the ideas of acceptance and compassion. I'd like to say I would have passed on those traits regardless of our journey, but having been down this road, I have a better understanding of what those words truly mean. It's amazing how much we learn from our children.

Immunology Testing

noreply@blogger.com (Wen) — Tue, 16 Jun 2009 15:41:00 +0000

So yesterday was our first visit with immunology. We're not convinced that Lizzie has an immunity problem, but the doctors have decided that we need to rule out immunity issues before moving forward. She technically meets the requirements to be at significant risk for Primary Immunity Defficiency (PID), which include multiple infections, resistant infections that have required hospitalization (as well as 2 pic lines) and recurrent chronic thrush.

While all those factors would generally point you in the direction of PID, there are a lot of factors that would lead you the opposite way as well. The big one being that she is growing and developing so well. She's never had failure to thrive and even through all of her surgeries and infections, she has continued to stay in the top 75-80% on the growth charts. Her infections have been well controlled and relatively easy to treat, and her anatomical defects could also be responsible for many of her problems. As for the thrush, I'm at a loss there, but the constant antibiotics for two years could still be playing a role in her yeast problems.

We were unable to see the immunologist that we had hoped for at the Children's Hospital, so we had to settle for an allergy/asthma specialist that also does initial immunity testing. Too be honest, I was a little concerned about not seeing an immunologist, but our peds assured us that he could run the initial testing needed and we could move forward from there. If the tests come back with abnormal results, we can see another doctor if we need to.

So yesterday was the big day, and most of my fears about not seeing an immunologist were validated. :( The nurse started asking a few allergy related questions, and I let her know that allergies were not a significant issue. She was obviously confused so I told her we were there for immunity testing. She simply said, the doctor will be with you in a minute and walked out. A few minutes later, the doctor came in, asked 2-3 questions and began reading the chart....you know the one he has had for a few weeks... the one explaining why we were there. Grrrrrrr....... A few minutes later he says: well lets see if we have what we need to get the blood work done. They asked how I thought she would do for the blood draw, and I explained that she was used to blood draws and that it would really not be an issue for her. Just tell her that the butterfly (needle) would bite and it would hurt for a minute then afterwards she could have a sucker. We've been down this road a time or two ya know?

Well, apparently they were not equipped and seemed uncomfortable, which made me uncomfortable and we decided that we should go to the lab and have it drawn. The doctor agreed and explained that they would take some blood, check for immunity issues and then meet with us in 2 weeks for the results. In other words, I spent an hour for them to tell me NOTHING, ask NOTHING, and do NOTHING. They were completely unprepared despite the referral. All I got was the "she looks really healthy, so I don't expect there to be any problems, so that's good news" comment before we left. Really? Is that your expert opinion? You don't think we've heard that before? We heard it before her first surgery, before her first pic line, her second surgery, her MRI...... the list goes on. What a completely ridiculous thing to say! It's not like we showed up just for fun. We've had two seperate doctors recommend this as our next step.

We finally made it to the lab (late... thanks to terrible directions from the receptionist) and of course Lizzie did great. Not a tear in site. The butterfly bit her, they took 5 viles of blood, she got a sucker. What an amazing little trooper! The nurse was also fabulous!

So now we just wait 2 weeks to see the doctor again. I can hardly wait (yeah, that's sarcasm you're hearing). Maybe he'll have some more wonderful words of wisdom. I hope that he is right, and that everything is fine with her immunity system, but only time will tell. Waiting for these results is not nearly as stressful as some of the others have been, but maybe that's because we're not expecting much from this testing, at least we hope not anyway.

Potty Training...Lord help me!

noreply@blogger.com (Wen) — Sat, 30 May 2009 03:20:00 +0000

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.

Hooray for Viruses!!

noreply@blogger.com (Wen) — Tue, 19 May 2009 15:45:00 +0000

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!

Another long night

noreply@blogger.com (Wen) — Mon, 18 May 2009 03:21:00 +0000

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.

The latest on Lizzie

noreply@blogger.com (Wen) — Fri, 15 May 2009 21:17:00 +0000

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!

Feeling better today :)

noreply@blogger.com (Wen) — Wed, 06 May 2009 02:16:00 +0000

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

noreply@blogger.com (Wen) — Tue, 05 May 2009 01:37:00 +0000

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.

Update on Lizzie Boo

noreply@blogger.com (Wen) — Sat, 02 May 2009 21:22:00 +0000

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

The New Site...

noreply@blogger.com (Wen) — Sat, 02 May 2009 21:12:00 +0000

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?)

Why National Kidney Month Means so Much to our Family

noreply@blogger.com (Wen) — Sat, 02 May 2009 21:10:00 +0000

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/

Diapering a Vesicostomy

noreply@blogger.com (Wen) — Wed, 22 Apr 2009 04:39:00 +0000

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! :)

Can we talk (whine) about yeast?

noreply@blogger.com (Wen) — Tue, 10 Mar 2009 03:15:00 +0000

I'm cross-posting this here and in my "old" blog, so that I don't lose my history when I move the site over.... (just in case you find this twice :P)

Lizzie has really been struggling with yeast infections over the last 6 months or so, and too be honest I’m losing my mind. I just feel so bad for her and so frustrated that I can’t “fix” it. The last few infections started as thrush, and then a few days later she shows signs of a vaginal infection. What toddler (unless breast feeding) gets thrush at almost two?!?! I’m sad to admit it, but this is one of those things that I’m a little less natural minded about. Yeast is no fun, and I just can’t stand to see her uncomfortable ya know? The first sign warrants a call to peds and a Nystatin script. It’s just a battle I can’t win naturally thanks to those pesky antibiotics. But I’m working at changing that. Will I be successful? Who knows, but what can it hurt? I’ll still run for Nystatin, at that first little blister, but it certainly can’t hurt to try and stop it before it gets to that point.

Over the last few months, the yeasties seem to be getting more aggressive. The infections come closer and closer together, and I am starting to see the effects on her health. For one, she is always uncomfortable. How sad is it when “my booty hurts” is one of your kid’s first sentences? LOL Another concern is that her immune system seems to be affected by the constant infections and constant antibiotics. She just seems to always catch one bug after the other.

So what am I going to do other than whine? I’m embarking on a new adventure, and yeah, I said embarking, and I’m calling it an adventure. The goal…. basically overhaul her diet. It’s overwhelming… abnormally overwhelming to me for some unknown reason, but it’s almost Spring and Spring is the time of new beginnings. Not too mention that the garden is calling. It so much easier to eat healthy when you can pick it fresh. It’s the nature of the beast.

Lizzie has pretty much always been on a pretty low sugar diet but now it’s time to do the limbo… how low can we go? Her yeast is obviously worsened by it, but I don’t feel comfortable cutting fruit out of her diet. She’s becoming such a picky eater, and fruit is our fall back guy. When she won’t eat anything else, he saves the day. So the goal will be to eliminate all of the other sugars that we can (without losing our minds in the process) and slowly cut back on the fruit and see if there is any change. Wish me luck. I’m a little more concerned about mutiny from the men in the family than I am Lizzie! The boys like their sugar!

The next step is probiotic consistency. I give her probiotics randomly when I remember, and when we can afford it… which reminds me I should get on line and find a cheaper probiotic! But I digress… I need to be consistent and keep better journals of both the foods that she eats and the probiotics so that I can be more scientific about the results. I mean what is the point of doing it if you can’t figure out if it’s really helping? We were actually told by both peds and uro that probiotics were basically a waste of time and money because the antibiotics will kill off any good bacteria, making it a moot point (is that how you spell moot? Really?). After doing some research on my own, I still feel that if dosed at the right amount, at the right time, there is a chance that it may be beneficial not just with yeast, but also her immunity issues and constipation. So what can it hurt?

As for the yeast issue itself, I was a little surprised to find out that not as many kids deal with yeast issues as I would have thought while on prophylaxis for VUR. Maybe it’s just the people I know LOL, but in most of my “groups” it’s not been a big issue. I think I just assumed that it was pretty common.

My theory (which is worth a hill of beans) is that she has a major yeast overgrowth due to the constant high doses of antibiotics she received that first year (like 10 rounds). We have never been able to eliminate the yeast because it was followed by a constant low dose abx. I’m worried that unless we can find a more natural way to control the yeast, she may be battling it for years to come.

So that is the new project. We’ll see how it goes, and how she tolerates it all (along with the rest of us). We will be making some other adjustments in her diet as we learn more, but for now, high fiber - low sugar seems to be the goal. Sounds yummy huh? I know your just waiting for your dinner invitation….

Belly Bands/Belts for Babies!

noreply@blogger.com (Wen) — Sun, 06 Apr 2008 00:53:00 +0000

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. Take 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 lengthen 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. Next 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 bandage. 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 the 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 hooked to the IV and has constant heavy leakage.

So there you have it…. the Belly Band/Belt for babies.

Today was Lizzie's Urodynamics Test....

noreply@blogger.com (Wen) — Fri, 07 Mar 2008 03:09:00 +0000

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.