Our Little Lana

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August 22, 2008 – It was off to the doctor’s office for what I thought was a routine check.  However an hour before my appointment I had light labor pains every five minutes apart.   The doctor said oh it’s probably nothing because you are due September 15th but we will check instead of tummy measuring.   I was to a four so just as precaution I was sent to the hospital.  Once I got there my cousin was so upset because she said “You don’t want to be having this baby now…”  I said I know, but something is different.  The really strange thing – I had that feeling all along, but everyone said you’re just nervous (minded this was my second child and I knew what to expect).

They monitored me and everything at first was normal even doing an ultrasound and they were getting ready to release me when they noticed my little angel was flat lining.  My cousin came in and they began to prepare for an emergency C-section.  I was rolled to the OR given a spinal tap and was almost cut open when the doctor decided to check – I was a 10 so I delivered our angel on the OR table w/ techs helping trough it all. (They had never experienced that before!)   We named her Lana Grace and she was 8 lbs 4 oz w/ the cutest red hair.  While I was in recovery I had some minor set backs and when I got back to our angel she was being taken away from me to go to the NICU because she could not hold her body temperature.

Soon our world seems to spiral…they were saying she may have brain damage because her bowels were not seeming to empty properly.  They were given her an antibiotic because while testing her they found she had an infection (she never ran a fever- may I add through all the infections she only had one fever.  Our clue – she stopped eating which at first the doctors would not agree with me, but now they say Lana completely changed the rule!!) Then she developed not eating properly so we were tube feeding her.  Finally things began to calm down so it seemed.  The infection was gone all her BM’s and wet diapers were appearing to be normal, but she was barely making her needed CC’s at feeding time.  Due to her improving they felt she would do better at home in her own environment so two weeks later we were on our way home.

Home time was wonderful minus one week of being home I had to call 911 because of her reflux or so I thought.  Soon things began to change for Lana her skin was as though she had “baby acne” w/ bumps all over face and 5 weeks past thus putting Lana 7 weeks old our time at home came to end…. She had stopped eating.  We monitored her through the night per nurses orders because the clinic was so full of so much sickness they knew she could not risk getting sick.  We monitored her very closely and were to go to the ER if necessary.  Once we got to Sat. clinic at the doctors office things changed very very fast.  Her skin was pale, she had almost become lifeless though it seemed. They checked her blood levels and found she had an infection in her blood stream.  We were sent straight to the hospital. They admitted her to the hospital then done a spinal and found she was completely sepsis – she had spinal meningitis from the bacteria Ecoli.

They immediately began the process of making sure she was on the right meds and she seemed to turn around until her O2 stats dropped after 1 am.  The infection was now attacking her respiratory system.  As the doctor ran in she began immediately saying she was sorry because it seemed to be under control, a test they had done after admitting her came back and showed she had urological problems and our doctor told us that Lana was going to be air lifted to UNC Hospital in Chapel Hill, NC (which is an hour and 10 min drive) and she would do her best to get us the top Urologist there Dr. Sutherland.  As we waited for the aircraft we noticed that things must have been getting worse they had a nurse standing by the door prepared to do an emergency tracheotomy.  Around 2 am the air life team was in our room saying that time was not on our side because fog was settling and they had to go.  As they were leaving our room the last words they said was be prepared she could possibly on life support when we arrived.  With our hearts in our stomachs and lost not knowing what just happened we turned to family and friends who began to pray.  As we left the hospital I keep looking in the sky “would she make it”, “would the air craft make it” – why was I looking….. I don’t know because within 15 min our angel was already at UNC, but I keep searching during the entire drive to see if I could spot her.  Apparently I was not the only one looking – our Pastor was out in his yard at 2am praying and scanning the skies for our little angel in flight.

Once we arrived at UNC we checked in and found that Lana was in PICU.  We were told we could see her in about five min. which turned into an hour.  Finally the doctor on staff came out.  I felt my knees beginning to loose all stability the look on his face was that of lose and of regret.  However we found it to be a look of hopelessness on his part, but I could just feel even in a time like this God was not done with our angel.   I had an explainable peace however; at the time was the peace that of healing her so that we could keep her or peace of healing which had to take place in Heaven.  Either way – I knew she would be healed and therefore I hung on to HOPE and kept the FAITH!! He warned us of Lana being on life support and she was swollen almost to the point of non-recognition (I found out in Jan. of this year she was actually no responsive when she arrived to UNC.)   But Praise God she slowly started to come around.  We were not allowed to speak with her or touch her as this would make her react and possibly loose the valuable access line which we called the “Train” which was in her neck.  It was so long the leads were coming out from every direction.  As days went by her kidneys stopped working, only to return working again, she had allergic reactions to some of the dyes, they had a lot of trouble keeping the fluid off of her.  But finally the swelling was going and she was pulled off life support.  We FINALLY GOT TO HOLD OUR ANGEL and trying to feed her was a great task because it was as if she forgot how to eat.   She was put on a special formula for a little while to help with the kidneys (easier for them to filter) an amazedly once the infection was gone Lana face cleared up.  The baby acne was caused by her infection (this doesn’t mean all baby acne is infection – this was just in Lana’s case).  Lana was released from the hospital Nov. 1st only to return Nov. 7th.  She had at least 13-15 visits to the different hospitals from Oct. 2008 to May of 2009.  In between all of those visits she was re-infecting even on a preventative antibiotic.  In Jan of 09 she had her third surgery (the first two were dilatation of the urethra. This was her vesicostomy  she continued to have multiple infections.  Then in May of 2009 she had her ureterostomy without a preventative med and has not had an UTI since.  She does have stoma irritations from yeast occasionally but even that is reduced to a bare min. because we only use chlorine free diapers and wipes on her and do not allow her to stay in a soaked pull up long at all.  Lana also has Asthma and bowel complications, however due to an exact time schedule and monitoring her food, Lana is potty trained for BM’s and no problems with constipation, at this point..  Through all of this Lana has become resistant to a couple of antibiotics…….  She has had Two VCUG’s, no DMSA scan because she does have kidney scaring and the left kidney is smaller than normal and her right seems to be on target.  Due to no new scaring and her blood levels and blood pressure being normal they will not do this test because it is considered “unnecessary risk exposing her at this point” because it will not change the  treatment plan for Lana.  She goes to her urologist and nephrologists once a year now verse every 3 and 6 months.   Through all of this we found out Lana as VUR Grades 4 and 5 which is secondary to a non functioning bladder.  At this point she has not been diagnosed with a medical term for her bladder because they are not quite sure yet what to label her as.  We have gone from her needing an appendi-mitrofanoff for cathing only to possibly that as well as cathing from below.  Which tells me her bladder is changing!  She has also gone from sever hydronephrosis to mild which we were told it could take up to four years for it be considered normal (Lana’s case so far this seems to be true).

Lana is being trained to cath every night.  I cath her vesicostomy because it has not been closed yet because Dr. Sutherland wanted to have min. scaring when doing her reconstruction surgery around the age of 4 or 5 (she is 2.5 now). It is second nature to her and once she is done, she caths her teddy bear the exact way I cath her.  It is amazing to see how she has adapted.  We of course are still praying for the final miracle of complete healing so that Lana will not have to self cath the rest of her.  If she does I believe with all my heart God has already prepared her for that mentally just by her actions, now if I would let it go and put it in His hands so he can prepare me for HER journey. XXXXXX

Through this whole experience it has amazed me just how much of a miracle a baby really is.  I had a nurse sit down with me at the hospital and just cry because she said most people think that having a baby is not a serious risk and to be honest I was one of those people until Lana.  Lana and I both were at risk that day, but we were given the miracle of her life.  She has proven to be such a trooper and we have blessed with miracle after miracle.  Through all of this looking back it amazes me just what you can accomplish as a parent juggling a 2.5 year old and a new born.  I still cry at times thinking about how God gave us the strength to make it through.  Cathing and meds round the clock, a 2.5 year old longing to be in her mothers arms while adjusting living with someone else, my short term disability running out just as Lana had her vesicostomy and then having to return to work in order to provide insurance and keep our needs meet as well. Through all of this God provided… when there was no money God sent family, friends and even strangers to aid our need, when there was no food God sent friends to fill our cabinets both at the Ronald McDonald house and our home, when there was no energy to get our house in order God sent family to clean our home.  My husband and I were very determined that this was not going to push us apart and that vow thanks to God we have kept.  To be honest during this difficult time it only made us a lot closer.   The odd thing now is….I myself am crashing.  My doctor referred to me as a warrior in battle…  In this struggle to understand something you did not even know existed and fighting to keep your baby in the best care possible.   I just like all other parents with child with special needs do become consumed with this task and when things get better your body doesn’t now how to respond.  I seem to be barely putting one foot in front of the other to accomplish one single task much less the many I had before.  But I know with prayer, time and faith I too will be back to myself only better and stronger than before because I was allowed to go through this test.  Would I wish it on myself or my child again NO!! But yes I am thankful for this because I have come out of this a lot better and stronger person than I ever dreamed I could be.  XXXXXXXXX

My wish out of all of this “I wish I could have Lana’s outlook on life, child like faith and the ability to move on in the must difficult circumstances.”  I have these; it just takes me a little longer.

Just two more notes about Lana….

When Lana was first diagnosed, we were told out of  their 100’s of patients her primary Dr. office sees (Which is 10 doctors and NP’s total) Lana was the first case they had seen.  Bitter sweetly, there is now a second child however he is a little boy that is around Lana’s age. I say bitter because I hate there is another child having to go through this, but sweetly because maybe we could meet and go through this together.   I am praying that someday we may meet and Lana’s doctor is going to see how the other mother feels about us meeting since I have shown interest!!

Lana has met and went above every mile stone for her age; she amazes me at 2.5 counting to 10!   She is very laid back and such a “tough cookie”.  I get so tickled at her… When her sister cries about something she will say “Bailea (who is 4.5) stop being a baby everything is going to be OK!!!”  She started day care in Feb. 2011 and functioning just like any 2.5 year old would.  This is the reason this is so important….The doctors told us that she would barley met her miles stones if even come close and one Dr. even told us we might want to consider a special school for her.  I am so glad that we did not except this we prayed and our prayer was answered!!

“God allows us to experience the low points of life in order to teach us lessons we could not learn in any other way. The way we learn those lessons is not to deny the feelings but to find the meanings underlying them.”

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.”

Nashville Gift of Life Walk

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We are excited to say that we will be walking again this year in the Nashville Gift of Life Walk benefiting the Tennessee Kidney Foundation.  There’s no better way to spend an afternoon than hanging out with family and friends, while supporting a great cause.

We will be doing a number of fundraising projects throughout the year, and as always we appreciate your continued support.    If you would like to sponsor our team in the walk, you can do so here.  We would also love for you to come and walk with us!  Live far away?  Find a local kidney walk in your area and start your own team!

Jocelyn’s Story

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Jocelyn was born July 5th, 2008 a happy, healthy baby girl, so we thought. It wouldn’t be until 8 weeks later that we would begin our medical journey with her. Our lives would be altered in a way I never thought possible…sick babies happen to other people. I would know more about urine and how people pee than I would ever want to know.

When Jocelyn was about 4 or 5 weeks old she began to get very fussy. I was thinking colic was setting in. She would spit up quite a bit of her formula, so then we thought acid reflux and we changed her formula. By the time she hit 7 and 8 weeks she would scream for an hour straight! I was pulling my hair out by this time.

One morning, September 3rd, she woke up with a fever of 101.8. I gave her some Tylenol and it went down to 101. The doctor didn’t open for another hour. I knew something was wrong with her. By the time the doctor opened her temperature was back up to 102. I called the doctor and the nurse told me to continue to give Tylenol and Motrin and that 102 was not a fever (keep in mind she is 8 weeks old). I piggy backed the Motrin and Tylenol, like they said, but she was just flopping around and rarely smiling and she would break out into a crying fit for no reason.

After one of her naps and before it was time for any more medicine, her temp was 103! I called the doctor and they said to keep giving her the Tylenol. I refused to accept this as an answer and said they would give me an appointment or I would be there in 15 minutes, either way, they WOULD see Jocelyn TODAY!

By the time we arrived at the doctors office her temp was almost 104 and we were sent to A.I. DuPont Children’s Hospital. When we arrived they took us right in and her temp got as high as 105.6! They told us she was probably going in and out of consciousness at this point. They ran all sorts of tests on my newborn. Urine culture, blood work and even a spinal tap! After all this they admitted us and the next day we were told that she had a urinary tract infection. They sent us down for an ultrasound and the next thing we knew we were face to face with the Chief of Urology. Our journey started as she said that Jocelyn had Renal Reflux.

Over the next few weeks there were tests and scans galore. Jocelyn was diagnosed with Grade 5+ reflux on her right side with severe hydronephrosis and Grade 4 on the left with hydronephrosis. The doctor also didn’t like how her bladder looked so we scheduled more tests and scans.

In May of 2009, when Jocelyn was almost 9 months old were got the worst of our news. Jocelyn would undoubtedly need surgery for her reflux and she was diagnosed with Non Neurogenic Neurogenic Bladder (NNNB). Her bladder was very small, thick and muscular because it was contracting constantly. This causes pressures in the bladder to be high which caused her to reflux. I have heard it described as a boiling kettle with no where to release the steam. It is the bladder pressure which can cause the greatest damage to the kidneys. Her bladder also does not completely empty, so we were told we would have to catheterize her every 4 hours. I wanted to look that nurse in the face and say “No! I’m not doing it” and cross my arms like a little kid but I knew I had to learn how to do it to save my baby’s bladder and kidneys from further damage. Children with Spina Bifida usually have a bladder like Jocelyn’s. Thankfully Spina Bifida was ruled out for her. This condition is VERY rare in infants and she is, essentially, writing her own statistics.

We have now been cathing for almost 2 years and it is going well. She knows we have to “get the pee pee out” and even likes to help wherever possible…usually just taking the tube out. Right now, the hardest part is wondering about potty training and we will probably home school until she learns how to do it and she can be trusted to do it on schedule. The worst part about cathing is actually her medicine that renders her bladder as only a holding tank. It no longer functions or contracts which has allowed it to grow and hold more, but her medicine, Oxybutynin, causes her not to sweat. So in the summer we can’t have her in the sun too long because she breaks out into a rash and she could actually have a heat stroke, so her medicine restricts our activity more than the actual cathing, which really can be done anywhere.

In February 2010, when Jocelyn was almost 19 months old, she went in for surgery to correct the reflux. I remember on the night before surgery it was hard for me to put her to bed and I kissed her belly where I knew there would be scar there in a matter of hours. The surgery was to do a bilateral ureteral reimplantation to raise the ureters higher up in the bladder and create new valves. The surgery was successful! No more reflux for Jocelyn!

In July 2010, just after her 2nd birthday, she spiked a fever of 102 and was screaming and WANTED her pee pee out, which she never volunteers for. We waited for daddy to come home early from work and off to the ER we went with another UTI. She had gotten the Proteus Bug…which is common in people with complicated urinary tracts and cathing patients…Jocelyn fit the bill for that! An overnight stay and some antibiotics in her system and she was all clear to go home.

October 2010, she complained about her pee pee again. We sent in a culture and, again, diagnosed with the Proteus Bug. No ER stays they just called in some antibiotics and she cleared right up. I wondered how many times we would go through this? How often would Jocelyn be in pain and on antibiotics that tore her stomach up.

Currently, Jocelyn has been infection free since October 2010. Her recent tests and scans show that her kidneys are still functioning at 40Rt/60Lt. We have taken her off the antibiotics that she took daily. Every so often she complains of her pee pee hurting but we fill her with water and juices and her urine clears up, although it still has a very strong smell due to, what I am sure have become, resident, or colonized, bacteria. She has blossomed so much over these past few months. She is becoming her own little person with her own likes and dislikes and she is not afraid to tell us so. We are very proud of how brave she has been through all of this. People tell me I am such a strong mother, but I think strength is hereditary, and I get it from my daughter!

Visit us at www.walkersforjocelyn.webs.com and “Like” us on Facebook “Walkers for Jocelyn-Kidney Walk” to follow her journey.

POW! Right in the Kisser!

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Most days I forget that my kid has special needs.   She’s smart, beautiful, rotten, and lives to aggravate her brother. She’s your perfectly normal average kiddo. Then one day, WHAM!  It hits me like a ton of bricks and I remember what a long road we have traveled and how much further we have yet to go.  Of course it can’t ever happen when I’m home alone with a glass of wine.  No, of course not.  It’s always when I least expect it and have zero time to deal with it.   Which is exactly what happened today… over and over and over again.

Lizzie has been begging to have a friend over, so today we had cousin H over for a play date.  She was so excited!  We picked him up on our way home, and once we got in the house I asked Lizzie to change her pull-up.  No problem.  She went right in, changed herself and that was that.  I started herding them towards the door to play outside when she stopped me and said, “you have to change H’s pull-ups!”  I explained to her that H wasn’t wet, and she said I needed to change him anyway.  This is when things started going very badly.

Lizzie suddenly realized that H (whose younger than she is) was wearing big boy underwear, and let’s just say it didn’t sit well with her.  Ok, let’s be honest and say, she went absolutely berserk!  She ran in her room, slammed the door shut, and leaned against it so that I couldn’t open it. She then proceeded to yell through the door at the top of her lungs in several different languages.  She was apparently never coming out of her room again unless I let her wear underwear.  Never!!!

Eventually I convinced her to open the door.  I’d love to say it was my fabulous parenting skills,  but it was mostly the Valentine’s Day cookies that convinced her to finally come out (is there anything that girl won’t do for some sugar?).  She came out, wiped her tears and climbed up in my lap.  With a mouthful of cookie crumbs  she whispered in my ear, “I’m bigger than him, and it’s just not fair mom.  It’s just not fair at all.”  She then grabbed her second cookie and ran off to play.  She was over it.  The end.  I on the other hand, was just getting started.

Talk about brokenhearted.   I was barely holding it together.  I sent the kids to the swing set and I sat on the porch for a little time out and a tear or two.  I learned a long time ago that sometimes you need to take time to grieve.  It’s ok to be sad and broken …. sometimes.   You just can’t let it take over.  A quick little pity party, no more and no less.  It’s surprisingly therapeutic, and then you move on.

About an hour later, as I’m eavesdropping on the sweet conversation between 3 year olds, it hits me all over again.  Boo: “H, will you hold my hand?”  H:”Sure!”  Boo:  ”I can’t wear underwear.”  H:  ”Sorry.”  Boo:  ”Yeah, me too. But I don’t eat baby food.”  And then they jump on the swing and begin talking about the weather.  Literally!  So innocent and  so beautiful.   And so hard for a mother to hear.

I just had no idea how strongly she was feeling about it all.   I’m her mom, how could I not know?  We’ve had the great underwear discussion a number of times, but she’s always seemed to understand it and accept it pretty well.  She’s never been happy about it (who can blame her?) but she’s a smart girl, and she gets it.  Kids with a vesicostomy are wet all.the.time.  It’s just a part of who she is, for better or worse.   Unfortunately, that doesn’t make it any easier for her and it doesn’t make her feel like any less of a baby.  Where’s the manual that tells you how to fix that?!

We had one last discussion about it… over dinner of course!  We were hanging out at the local Mexican restaurant doing the whole family thing when Lizzie busts out (at the top of her lungs I might add!) “Hey mom!  Do you wear underwear?”  Nothing like living in a small town and having your kid yelling about your underwear at the dinner table.  Might not have been so bad if it had stopped there, but of course we spent the next 20 minutes discussing the ins and outs of undies.  Isn’t that what your family talked about over dinner?

So here I am tonight feeling a little sorry for myself and a lot sorry for my sweet babe.  She’s been through so much, and it’s just not fair. Don’t get me wrong, I know how very lucky we are.  And most days that’s enough.  But being mom isn’t always easy.  Making decisions about your kiddos isn’t easy.  Some days it just sucks.  It happens to the best of us. Lucky for me tomorrow is a brand new day!

And We Have a Date!

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Not the fun, hang out with your friends kind of date, but a date nonetheless. And even though there’s no dinner involved we’re still pretty excited about it. At least I think we are. Today was Boo’s urology appointment and as usual she did fabulous. Have I mentioned lately how much that kid amazes me? Her renal ultrasound looked great with no new abnormalities or hydro, and the kidneys appear to be growing well. Blood pressure also looked good today, so we couldn’t be happier.

After all that fun testing, we met with Dr. P and discussed what our options were at this point. Basically we have 2 options, surgery now or surgery later. Originally we thought the plan was to only have the vesicostomy for about 12 months, but that was almost 3 years ago. We’ve known all along that at some point she would have the vesicostomy reversed, but we’ve been in no hurry to take it down since it has been working so well. We were actually expecting another year or 2, but apparently the time has come. On most levels I’m really excited about the reversal. It’s exciting to be moving toward something a bit more normal. Heaven knows we’ve got very little normal around here to begin with.

There is of course another big part of me that is completely terrified. Like the doctor said, “we’re going to take it down and cross our fingers” because that’s about all we can do. Reassuring huh? You don’t really want your surgeon saying he’s going to cross his fingers when talking about your kid and a knife, but the truth is that we really have no idea what the reversal will mean. We can’t do any testing to see what is going on while the bladder is open, but we have to reverse it sometime.

Obviously our hope is that everything goes well, and her bladder works correctly on it’s own, and that the VUR is resolved. We realize that that’s a lot of hoping, and as much as we pray it happens, Dr. P made sure that I knew that this might mean we start back at square 1. And believe me, square 1 is not a place I ever want to go back to. Never. Ever.

After weighing all of our options, we made a really tough decision, but one that we feel really good about. We’re moving ahead with the surgery and we have a date. June 1st. Just saying it out loud makes me nervous, and I have a feeling that the next few months are going to be really long ones. Time ceases to fly when your waiting, waiting, waiting…. and we all know how very patient I am (haha!). So do me a favor and put Boo and Dr. P on your prayer list. I know they will be on the top of mine!

We’re off to see the Wizard…

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The wonderful Wizard of Urology.  Doesn’t sound that exciting, but believe me, it’s more like Oz than you might think.  Fortunately for us, it’s been 6 months since we’ve seen the wizard, and that alone is pretty darn exciting.  Even better? We’ve somehow managed to avoid not just Urology, but  Nephrology and Immunology for the last 6 months as well.  Ahh the ever elusive trifecta.  Now that’s what I call a nice vacation.

But then, all good things must come to an end.

Too be honest, I’m actually looking forward to today’s visit.  Crazy I know.  I mean who looks forward to sitting in a doctors office all morning with a rowdy 3 year old?   Why me of course!

Really I’m just excited to finally have some good news to share with Dr. P!  Boo can’t wait  to tell Dr. P her “super big news”….  she is pooping in the potty!  All by herself.  It’s a pretty big deal for us. She’s really excited about it and we couldn’t be more proud.  She keeps telling me how proud Dr. P is going to be, how he’s going to be excited.  Don’t worry, I have every intention of sliding him a note letting him know that jumping up and down is fully expected upon hearing the news.  After all, I’m pretty sure I’ve paid for his middle child’s tuition.  It’s the least he can do.

In all honesty, I’m sure he will be super excited for her! She’s only had a handful of accidents since Christmas, and for the first time I feel real optimism about the future. Don’t get me wrong, I’ve always been hopeful, but 24 months ago we were discussing the possibility of nerve damage to both her bladder and bowel.  Now we know she has sensation to her bowel,  and we’re pretty sure to her bladder as well.  Believe me, that’s exciting news!  Who knew poop would be so exciting?!?!?

So what does it all mean?  Well, who knows really?  It is Oz after all, so anything could happen.  What we are hoping is that this may move her next surgery up about 6 months, which would mean she could have the vesicostomy reversed this time next year.  Then we’ll only be 3 years past our original projection of 12 months (haha!).  Hey, I’ll take it!  Other than that, we just keep on keeping on as long as her blood pressure looks good, and she isn’t showing any new abnormalities in the ureters or kidneys.  If everything is growing and looking good then we climb back on the waiting train until our next urology visit, which we hope is not for another 6 months!

Constipation and Reflux, What’s the Connection?

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We were well into Lizzie’s journey before discovered there was a connection between constipation, voiding dysfunction and vesicoureteral reflux. It was first mentioned by the urologist that we saw for a second opinion. I was surprised when one of the first questions he asked was if she had any problems with constipation? Too be honest, it left me scratching my head for a minute. Does she have problems with constipation?  I didn’t really know She was constipated at times, but no more than any other kid I guess, why did it matter?

After discussing some of the issues related to constipation and reflux, I began to realize that the answer to that question was pretty important. Even mild, sporadic constipation could have negative effects on Lizzie’s urinary system. I went home and started doing some research. I needed to understand why it caused problems and what I should be doing to prevent it. I was surprised at the amount of information out there. How had I never seen any of this, and why had no one mentioned it before? What I discovered is that parents of children with kidney reflux need to be especially diligent when it comes to constipation. Not only is constipation uncomfortable for the child, but it can lead to recurrent urinary tract infection, and may actually delay the resolution of reflux among other complications.

Constipation is defined as a very hard stool, pain that is associated with passing stool, or failure for a child to pass three stools in a seven day period. So what is it about constipation that makes it so dangerous for children with reflux? When a child is constipated, the stool that is impacted in the rectum compresses the bladder, which can reduce the capacity of the bladder and give the child an earlier sensation to void. This can in turn prevent relaxation during voiding which can cause urine to remain in the bladder after voiding, which basically means that the bladder does not empty completely. The danger is that the longer urine sits in the bladder, the greater chance bacteria has to colonize in the urine, which can lead to urinary tract infection.

Another theory is that once a child has had a painful experience passing stool, they are more likely to withhold stool in order to avoid another painful experience. This starts a vicious cycle of further constipation, and other complications. When a child withholds stool, they will usually withhold urine as well. Again, this leads to pressure on the bladder, and urine being left in the bladder. Voiding dysfunction is cyclic and can be hard to treat once habits have set in.

I began reading about how voiding dysfunction and constipation are closely linked, and when seen together, they are referred to as Dysfunctional Elimination Syndrome (DES). This is one of the articles that I found very interesting. It discusses the impact of constipation, dysfunctional elimination syndrome (DES) and Vesicoureteral Reflux specifically. It talks about a study that showed for patients that did NOT have DES, only 18% experienced breakthrough UTI’s and eventually needed surgery. Kids with breakthrough UTI also had a much higher rate of DES, 77%. Many of the children that were able to control their DES, also helped in resolution of reflux. Even though this was a small study, I found these statistics pretty significant.  I immediately saw the importance of treating constipation and voiding dysfunction.  The article went on to talk about how the resolution rates of reflux are delayed in children with DES. Resolution rates are lower and slower, and may take an average of 1.6 years longer for reflux to resolve. That’s a long time when you think of the chances of recurrent infection, as well as all of the testing and antibiotics required to manage VUR.

Now that we understood the importance of eliminating constipation, our next step was trying to figure out what steps were needed to manage it and prevent it. We quickly realized that this was sometimes much easier said than done.

The first thing we did is increase Lizzie’s fiber intake by adding more fruits, whole grains and vegetables to her diet. We also decreased some of the more binding foods, like bananas and cheese. We increased her fluid intake which is a big key to treating and preventing constipation. For a lot of children, changing diet may be enough to keep the bowels moving well. For others, a supplement may need to be given in order to keep the stool soft. Our doctor recommended Miralax, which is given daily.

For severe constipation, or impaction, a child may need multiple high doses of Miralax or stronger methods in order to clean out any impaction before starting a daily routine. You should discuss dosages with your doctor, and may also want to discuss doing an x-ray to diagnose impaction.

Lizzie still sometimes struggles with occassional constipation, but by changing her diet, increasing her fluid intake, and using Miralax daily, we have eliminated a lot of her constipation issues. I believe that in our daughter’s case, this has also helped relieve some of her bladder spasms which can also be caused by constipation. When I first started reading about all of this, I didn’t even realize that my daughter was having any constipation issues. Now I feel like we are taking one more step toward helping her body heal, and giving her a greater chance of resolution.

What is a Vesicostomy?

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We were completely blindsided when the urologist told us that Lizzie would need a vesicostomy. Throughout my research I had seen the rare cases when urinary diversion was required, but you never expect that your child will fall into that category. Looking back, maybe I should have expected it .  I should have realized we were going down this slippery slope, but instead I was just standing there with no idea what I should say. What do you even ask the doctors?  He just told me what it was, sort of.  Didn’t he?  I realized that I needed to know more about what a cutaneous vesicostomy was, and why they thought it might help my daughter. This is what I learned.

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 then into the bladder. The surgeon will take the edge of the bladder, 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 like tubes 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 problems in their urinary tract. This may include children with posterior urethral valves, vesicoureteral reflux, or neurogenic bladder. A vesicostomy keeps the bladder constantly emptying which helps prevent urine from sitting in the bladder. This can help reduce urinary tract infections, and kidney damage. If there is no urine sitting in the bladder, it may be more difficult for bacteria to colonize. In the case of VUR, urine that is eliminated quickly will also be less likely to move into the kidneys. It also allows time for growth, development and healing.

For Lizzie, the vesicostomy has stopped her UTIs completely. We are really pleased at the success of her surgery. Lizzie went from having a kidney infection every single month, to being infection free for 12 months.  When I originally wrote this article, it had been 12 months, it has now been almost 3 years of being infection free! It has meant the difference between a life filled with infections and hospital stays, and a life that’s pretty darn close to normal.

Studies have shown that a vesicostomy is very successful in maintaining renal function and preventing kidney damage in children. Because it is easily reversed, it can be taken down when the child is older, healthier, 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 under 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 or more.

Care for a vesicostomy is pretty basic. The stoma may need to be dilated at some time, but you will want to discuss it with your doctor. We have never had to dilate Lizzie’s, and our uro says that as long as it is still draining well, it is fine. He told us that the stoma was made large to anticipate growth, so we should expect some shrinkage. The first picture was taken a few days after Lizzie’s surgery and the second is what it looks like now.

For the first week or so, we were told to keep an antibiotic ointment on the opening to prevent infection, and your child will be prescribed an oral antibiotic and possibly pain medication. Lizzie was also given Ditropan to help control bladder spasms, which are generally mild, after surgery. Your child’s diaper should be changed frequently to prevent skin abrasions from the 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
Excessive vomiting

You may also want to contact your doctor if you notice that the skin around the stoma is breaking down. Diapering a child with a vesicostomy can sometimes be tricky, and we have found it to be the most difficult part of the vesicostomy so far. Sometimes keeping Lizzie dry can be quite challenging. What we have found to be most effective is using a large size pull-up and then taking a small diaper (size 1 by day, size 2 at night) and turning it inside out and then tucking it in the front of the pull-up.  That way we can change the small diaper every hour or so, and not have to change the large pull-up quite so often.  It’s not ideal, but it has worked pretty well for us.

Lizzie’s Journey with Kidney Reflux

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Our little Lizzie was born in April, 2007. She was a perfectly healthy, beautiful baby girl weighing 7 pounds and 7 ounces. She completed our family of four, and we could not have been happier. We had no reason to suspect that she had any medical problems, and had no idea what our future would hold.

When Lizzie was six weeks old, we decided to visit  family about 3 hours away. My sister was having her fourth baby, and my brother’s wife had recently had her first. We had all shared our pregnancies together, and I was excited to have all the new babies together. I will forever be thankful that we made that trip.

While we were visiting, Lizzie slept through the night for the first time. She usually nursed at least once or twice through the night, so I was surprised that morning when I had to wake her to nurse. She ate well, and I chalked it up to excitement, and a change in schedule. We were all a little exhausted. She continued to sleep a little more than usual that day, but she seemed happy and content when she was awake. She wasn’t too interested in nursing, but she ate ok, and I didn’t think much of it. After all, she was a fat, healthy baby, so it just seemed like normal six week old baby stuff. That evening things began to change.

She felt a little warm, so I took her temperature, 99.5 F, nothing to really worry about, but I was becoming a little concerned. A short time later, when I felt her forehead, she seemed very hot. Her fever had spiked to 103 F and we went immediately to the nearest Children’s Hospital Clinic. It was only then that I began to realize how serious the situation was. Both the doctor and nurse were obviously concerned, and left the room to make phone calls. A few minutes later we were taken by ambulance to the nearest Children’s Hospital.

My world was turning completely upside down. I will never forget how absolutely tiny she looked sitting in her car seat, which was strapped to what seemed like an enormous gurney. It was completely surreal and absolutely terrifying. No one would tell me what might be wrong, or what we might be facing. I have never been as frightened as I was that night.

In just a few short hours our lives were changed forever. When we arrived at the hospital we were met at the door by a medical team and immediately taken to a room where they started an IV, and began running tests. I had no idea what to think or what to do. It was obvious that something was very wrong, and I had no idea what. It was all happening so fast, and no one could give me any answers. She was started on antibiotics, and by morning they had done multiple tests, chest x-rays, and a spinal tap. We were so disappointed and worried to discover that they still didn’t know what was wrong with our little girl.

The next few days were an exhausting roller coaster of ups and downs. They discovered a heart murmur, but were unsure if it was related to the infection or due to a problem with her heart. Her heart rate was very fast, and she was kept on a heart monitor much of the time she was hospitalized. For a while we were more concerned about her heart than her infection, and were thankful when her ekg later came back normal. The murmur was eventually attributed to the infection. We still weren’t sure what was wrong with our little girl, but we were beginning to rule out some of the more serious conditions, and the antibiotics seemed to be fighting the infection, whatever it was. Things were starting to look up.

On her fifth day in the hospital, Lizzie had a test called a VCUG and we finally discovered what had made our little girl so sick. Lizzie had a condition called Vesicoureteral Reflux (kidney reflux) and it had caused her to become very ill. A bacterial infection which had started in her bladder as a UTI had moved into her kidneys and was spreading throughout her body. Because she was so young, her immune system was weak, and the infection was moving into her other organs. We were very lucky to have gotten such wonderful medical care so quickly. I refuse to think about how different things might have been if we had been at home with just a small town hospital.

Too be honest, we were relieved when we first found out that Lizzie had kidney reflux. Yes, our child had a condition that can be very dangerous, but with early detection and the success of surgery, this was very good news compared to some of the other conditions that had been discussed . Lizzie had the most severe grade of VUR, and it was affecting both of her kidneys. We also discovered that she had an additional ureter on the left side and later found out that she had an additional ureter on the right side as well. We knew this might make surgery a little more complicated, but it doesn’t often cause a lot of complications. VUR would require her to be on daily antibiotics, and she would need surgery a few years down the road, but it was a very treatable condition, and we had time. We weren’t looking at surgery for another 3-5 years, and until then she would just require monitoring.  We could handle this.

She was released from the hospital on daily antibiotics, and she recovered quickly. She was growing, gaining weight and tolerating the antibiotics well. We were surprised seven weeks later when her fever spiked again. Another trip to the ER revealed another infection. After talking to her urologist and having another ultrasound, we were confident that by changing her daily antibiotic we would be able to keep her healthy. She was now 3 months old, and could take a stronger, more effective antibiotic which would hopefully keep her urine sterile. We were again very hopeful.

You can imagine my surprise and frustration when just a few weeks later, she showed signs of another infection. Multiple doctor visits and catheters later, we discovered that this time she had a resistant strain of bacteria which would require a hospital stay for IV antibiotics. After the first few days in the hospital, we were given 2 options. We could spend the next 8-10 days in the hospital, or she could have a pic line put in. A pic line would be a longer term IV through which we could give her the antibiotic infusions at home. It was a pretty easy decision to make at the time. If you’ve spent any amount in of time in a hospital, you know exactly what I mean. The following Monday she had her pic line placed. As always, she was amazingly patient, and she did great with the procedure, she has always been such a little fighter.

Before leaving the hospital, we spoke again to the urologist, and agreed that it was time to schedule her ureteral reimplantation surgery. We expected to have 3-5 years to think about this surgery. Instead she would be having her first surgery when she was just 5 months old. I was so sad and so scared for my baby. She seemed so small and fragile. I dreaded every part of the surgery, but I was also hopeful. This would finally mean no more infections, no more hospitals, and no more antibiotics. Lizzie would be a healthy little girl and we could put this behind us. I was really looking forward to that new chapter in our lives.

Before we made it to our surgery date, Lizzie had another infection.  Because of the infection , we were admitted to the hospital 24 hours before the surgery so that she could receive IV antibiotics to ensure the infection was gone. The next morning, our baby girl went in for surgery. She would have her ureters removed from her bladder and reimplanted back into the bladder in the correct place. The surgery is up to 98% successful and generally has few complications. Regardless of the statistics, as a parent you are always terrified. Placing your child in someone else’s hands for surgery is the hardest thing that I have ever faced. It was the longest 5 hours of my life. We hadn’t expected such a long surgery, but during the procedure, they found a fourth ureter which also needed to be reimplanted. I can’t even begin to describe the relief that I felt when the nurse came out to tell us that the surgery had gone well, and that we could see our baby.

Lizzie is an amazing little girl. She woke up from her surgery and began nursing right away. She struggled with dehydration and bladder spasms for a short time after the surgery, but after 2 days we were allowed to go home. The first week or so was hard, but I was surprised at how soon she was back to her happy, loveable, healthy self. The surgery was deemed a success, and we believed that our journey with VUR was finally over. Little did we know that our journey had just begun.

I was completely blindsided by her next infection. I just didn’t expect it. I remember taking her temperature and having this horrible feeling in the pit of my stomach. How could this be happening again? And why is it happening to us? After having another long conversation with our urologist, we were assured that this wasn’t terribly uncommon within the first 6 months after surgery.  We shouldn’t worry just yet. According to him, her body just needed some time to heal. This infection could be from swelling, or bacteria in the incision, or any other number of things. He assured us that it didn’t automatically mean the surgery had failed. We needed to stay optimistic. Her renal ultrasound looked good, and we would once again try changing her antibiotics and crossing our fingers. I tried to be optimistic and believe what he was saying. I had done enough research to know that he was right, the statistics say 98% success rate.  But it just didn’t feel right. Something else was going on with Lizzie, and I desperately needed someone to figure out what.

I have to admit, that I really wasn’t that surprised when, like clock-work, she got another infection 5 or 6 weeks later. I tried so hard to believe what they were telling me about the surgery, but I just knew deep down that something wasn’t right. Sometimes a mother just knows.  After this infection, we did another VCUG to see if we could figure out what was really going on. Her VCUG revealed that she still had high grade VUR, and her diagnosis remained unchanged. Her ureters were now in the correct place, and there was no real explanation for why her VUR had persisted, or why the surgery had not corrected the problem. So now what?

Our next step was to begin rotating her antibiotics weekly to try and keep the urine sterile, which of course did not work. Now she was having increasing bowel issues and yeast issues, and by the time we turned around, she had yet another infection. I was at at the end of my rope. To make matters worse, this time it was another resistant bacteria which would require another hospital stay and another pic line. I couldn’t believe that we were right back were we started before the surgery. In all honesty, I felt like we were going backwards. We still had no resolution of the VUR, she had now developed mild hydronephrosis and an enlarged bladder and here we were with more questions than answers.

This time the pic line placement did not go well, and I vowed to do all I could to never be in this situation again. It was a horrible terrible experience and I was determined to find answers.  We needed to be aggressive, much more aggressive. Each new infection could potentially permanently damage her kidneys and cause more complications. Studies show that kidney damage is most common in children under the age of 1, during active kidney infections. Lizzie was only 10 months old, and she was racking up the infections one after the other. Lizzie’s kidneys continued to look good on ultrasound, which we were very thankful for, but we also knew that one more infection could change that. We were desperate to find a way to keep her kidneys safe.

Our next step was to have a video-urodynamics study done. This test would show if there were any problems in her bladder that might be causing her reflux as a secondary condition. Much to our surprise, her bladder was working pretty well, but was grossly enlarged. It was so large, that the nurse actually stopped the test before the bladder was completely full, because she was afraid of doing damage. At this point, we decided that until we had more answers, the best way to keep her kidneys safe was to have a cutaneous vesicostomy put in.

When Lizzie was 11 months old, she had her second surgery which would include two surgical procedures, one to put a vesicostomy in place and another to administer a Deflux injection. The vesicostomy is a urinary diversion that would divert her urine through her abdomen so that urine could not reflux into her kidneys and cause damage. This way her bladder would remain empty, making it harder for bacteria to colonize and harder for urine to move into the kidneys. We were hopeful that this would stop her constant kidney infections, and buy us some time to find answers. The Deflux injection was done as a kind of Hail Mary. The hope is that it might reduce the reflux, by building a flap to prevent urine from entering the ureters. This is not commonly done for grade V bilateral reflux, but because she was already under general anesthesia with an incision in the bladder, we decided that there was little risk in performing the procedure, and we’re keeping our fingers crossed that it might even work.

The vesicostomy has worked better than we could have ever imagined, and has been a true blessing to our little Lizzie. Since her surgery she has not had a single urinary tract infection, which is obviously a huge thing for us. I can’t say it is always easy, but it is always worth it. Always.

Lizzie is about to turn four and she is doing great. Since her last surgery, we have continued testing and looking for answers. She had an MRI to rule out spinal abnormalities which can sometimes cause urinary problems. We were thankful when the test showed no abnormalities. She also underwent a DMSA scan which showed no significant scarring in the kidneys, which, too be quite honest is really a miracle. She does have some abnormalities in her kidneys. One kidney is much larger than the other, and the opposite kidney is being bent by pressure from her spleen. The good news is that the overall function of her kidneys is good. One is functioning at 41% and the other at 59%, keeping the overall function to 100% which is great! We recently had a scare with her blood pressure, but after further evaluation, we feel like it is remaining within the normal limits so for now we can let it ride, and just continue to monitor it.  We also continue to monitor her immunity system.  She has some mild immunity issues, but even her immunity issues have been significantly reduced since taking her off of daily antibiotics.

Lizzie still has an uncertain road and a long journey ahead of her. We have recently made the decision to take down her vesicostomy, and she will have surgery in June of this year.  It was a big decision, but we feel like it’s time, and we are glad to be moving forward.   Our hope of course is that when they take down the vesicostomy her bladder will work properly and that the reflux will have been corrected or resolved.  Unfortunately we have no way to test either of those things because of the opening in her bladder, which is just a little ironic if you think about it.

Removing the vesicostomy will hopefully be a positive experience, but we have to also be prepared for the fact that it could mean that the infections come back.  If they do?  Well, we’ll cross that road if we get there.  It certainly wouldn’t be the first time we’ve faced tough obstacles.  For now I’m doing my research,  looking forward with hope and expecting great things.  I’m also making sure to take time out along the way for Lizzie and I to stop and smell the roses.

For more information on Kidney Reflux click here.

What is Kidney Reflux?

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When our daughter Lizzie was diagnosed with Vesicoureteral Reflux (aka Kidney Reflux) we had no idea what that meant.   I had never even heard of kidney reflux and I certainly didn’t understand all that the doctor was telling me.   Our 6 week old daughter had been rushed to the Hospital with a high fever and had been put through a number of tests.  Now they were telling us that she had this condition called reflux and that it would probably require surgery somewhere down the line. In what seemed like a moment, our lives were changed forever. We now knew what was wrong with our little girl, but we still had no idea what that meant or what we could do to fix it.  And so our journey began.

Vesicoureteral Reflux (VUR) is also known as kidney reflux, or bladder reflux. There are two kinds of reflux, primary and secondary. Primary VUR affects 90% of the children that are diagnosed with reflux. In Primary VUR, children are born with a defect in the ureterovesical junction (UVJ valve). This basically means that there is a valve where the ureter enters the bladder, and that valve is not doing its job correctly. Because of this defect, there is an abnormal flow of urine from the bladder back up into the kidneys, where it can cause permanent damage.   Secondary VUR has the same abnormal flow of urine, but instead of being caused by a defect in the UVJ valve, it is caused by a secondary,  underlying condition such as nuerogenic bladder,  immunity disorder, or other medical condition.  With secondary VUR, the underlying condition must be treated to correct the reflux.

Reflux by itself is not dangerous. The danger comes when reflux is coupled with an infection in the urinary tract.  For unknown reasons, children with reflux often have a much higher incidence of urinary tract infection (UTI).  When a child with reflux develops a UTI, the infected urine moves upward into the kidneys where it can cause  the kidneys to become infected (pyelonephritis).  Infection in the kidneys can cause renal scarring, and damage to the kidneys, which can eventually lead to renal failure if not treated.

KidneyReflux can affect only one kidney or both. If only one kidney is affected, it is called unilateral reflux and when both kidneys are infected it is called bilateral reflux. In some cases, like the case of our daughter’s, there can be duplicated ureters (or extra ureters). In these cases, 1 or all of the ureters can be affected, and each ureter is given a grade. These grades are based on how severely each individual ureter is affected.

What is Kidney Reflux?
How is Reflux Graded?
Symptoms of Reflux
Testing for Reflux
Treatment for Reflux