Bladder Reflux

Some are aware that Breanna has something called Bladder Reflux, Basically this means that her bladder does not do a complete void.  When she goes to the washroom, she leaves some behind,  casuing it to travel back up into her kidneys.   This has caused alot of the issues she is having.  But we are working on her bladder muscles with intermittant catheterization.   This means that we have to do a manual catheter insert and completly empty her bladder.  We do this for times a day.  Well right now we are doing it 3 times a day but next week we will be doing 4 times a day which is what the DR ordered.  She will have to continue this porcess for many years to come.  Once she has a new kidney,  we will still have to do this process until her Bladder muscles rebuilt themselves and she is able to have control.,  In the begining,  this was not easy.   Not for either one of us.  For about a week,   you would have thought she was being raped!
Yes  Raped!  No parent should have to do this to their child.   BUT we do not have a choice.  Until she is ready to learn to do this herself,  this is something I have to do.  Why??????   Because I am her mom,  and that is what we do.   It did not take long for Breanna to calm down.  She does not yell anymore, we make jokes,  and talk about making apple juice.   We usually say it is for her brother.  I am pretty sure he will never take a bottle or a glass of apple juice from his sister Breanna.  Can't say I blame him...lol   This is the Joke that helps her get through this ordeal.   She is a trooper.  She now laughs and it is over and done withing 5 mintues.  It is second nature,  just like everything else she has had tolearn to deal with.  Why?  Becasue she has to!   It is a part of life.  Her life.   Till this day,  she is still the one thjat gives me the strenght that I need to get this everything we are dealing with.  It is not easy.   Not easy for anyone in our family.
But as long as we see progress,  we can't look back.  We have our baby girl at home with us.   She is not laying in a hospital bed,  she is dealing with life,  as it is thrown at her.   

Donation process has ended for Dad!!!!!!

Frustration!!!!!!!!!!!    That is one of the things that I felt when I got the news, that dad is not able to donate his kidney to Breanna.  It has been a VERY long 6 months, only to fiund out that it was for nothing.   Nothing for breanna anyways.  The good news that came from it was dad has some things of his own he needs to take care of.  So what is the next thing we do???  This not an easy thing to decide to do for ANYONE!  BUT.....we cannot wait for a phone call back or an email that has gone unanswered.  People are still living their lives and I am OK with that.  But don't ignore one of the most precious things to me.  That bothers me!!!!!!   That makes me mad!!!!!   If you decide you want to do something,  That is great.  If something comes up and you have changed your mind, that is fine to.  I get it!  But do not ignore the situation or the people that you already spoke to.   GRRRRRRRRRRR    Take a long look at what is going on your own life and make sure BEFORE you volunteer to do something like this for anyone, That it is the right decision for you and all involved.  I am frustrated that this wait is longer and getting longer everyday.  The word is out that Breanna needs a kidney.  Along with many many people in this world,  Breanna is my number one,  that needs a kidney.  She is the one I am fighting for today.  So for anyone that wants to do something,  I am putting the word out there that THEY need to take the step and make the call to Jennifer Cross in London,  She is on the transplant team and she is the go to person that takes care of everything that needs to be done.  Her phone number is 1-519-685-8500 ext. 35932.   You may also send her an email as she is a very busy person, as you could imagine.  Email is jennifer.cross@lhsc.on.ca.   It may take her a few days to get back to you.   But....she is full of information and knowledge.  Nothing is communicated to us.  It is all private and confidential. 
Overwhelmed  was my next feeling.   I have had a few people come to me and say, I want to do this for Breanna.  WOW!!!!  People that I did not expect.   I still come to tears when I talk to anyone about one person in particular.   One of my favorite cousins!!!!!!    It hit me hard when I heard that she wanted to do this.  Putting my baby as her number one.   I still have not gotten over the overwhelming feeling.   I know that I have to do something about this but right now,  it is hard,  Very hard for me.  Being overwhelmed with the amount of support has not stopped.   This is a new kind of overwhelmed!!!!   I can't describe it.

OK  That is enough,  just typing i am in tears.  REALLY!!!!!!

EMOTIONAl is how I can describe our last visit to London!!!

We had a good clinic visit while in London,  it was the after math that turned into one of the worst days of my life!!!!!!!!  All her blood work is good, We did a 24hr uring sample and a peritoneal fluid drain sample and no concerns.  He is concerned that her iron is low so we added one more iron pill for the day.  knock on wood the iron pills are not upseting her stomach at all.  That is a good thing becasue I guerss it is very common for that to happen.  We also discovered at this visit she may have an allergy to nickel.  She breaks out in a rash on her hand every once in a while so that is something new we have to watch for.  Not a big deal but still concerning.  Once we were done in regular clinic Breanna had to have something to at, so dad took her for a bagel at timmies.  With that she had a rootbeer.  For breakfast on our way up she had a bagel and apple juice.  After she ate we wnt over tot he catheter clinic to start training.  This is where the day turned into a NIGHTMARE.
We had no idea what to expect going on.  We did sit with Dorothy Harris who is the oerson we will talk to and be trained through. She is the catheter go to person.  She went over a bunch of information on all the supplies we need and pictures of the steps to take.  We watched a 12 minute video of kids that do this for themselves daily.  It shows us that,  once Breanna gets used to it,  it will become second nature for her.  (This will take awhile)  Breanna has had alot of things she has had to learn to do to survive on a daily basis.
This is just one more thing that we will both get through.  It is not going to be easy but we understand how importanmt this is.   It is not a permanent catheter.   It is something she has to do 4 times a day manully. 
Breanna is very private.  She does not like anyone looking at her private areas let alond mom having to get right in there to insert a catheter.  Having to do this to my daughter is HEART WRENCHING.  I know I will get through it becasue I have to.   THAT IS WHAT I HAVE TO DO!!!!!!!!!!!!
Our very first day, we had to do this.   I went in with an open mind and thought, OK  this will just be another part of our daily routine!....When I seen the HORROR on Breanna's face,  I knew it was going to be rough.  I just didn't know how rough.  Having to touch her and insert a tube into her Urethra is NOT FUN.   Listening to her SCREAM in pain yelling at me to take it out, ripped at my heart. 
We didn't get any urine and we finished,  I pulled it out and me and Dorothy switched places so that I could my daughter and cry with her.  That I did!!!!!!
I do have some supplies here and we have to get it started in baby steps.  I need to work on gettinmg through this and helping Breanna get through this.  I know once we have a few timeas done, it will get easier.  Just like everythng else.  But I also know that this over ANYTHING ELSE, will take ALOT of TEARS.  AND ALOT OF TIME!!!!!!!!!
I have to see where I can get supplies from,  this is not something that is covered with the other supplies.  So today I will go shopping to see what I can get and start the process.   Tomorrow will not be a fun day.  As we try it again. 
Just when I think we can get on with our day.  We go to Jack Astors for Dinner.  I figured it would be for lunch but we were at clinics until 4:30.  So as we sit there Breanna was hungry and starting to get some pain in her upper stomach.  Heartburn area.   We figured maybe she was hungry.  She was hungry but eating some bread and some cecear salad did not help that pain at all.  She had a few bites of her Chicken Fingers and that was it.  Her pain got worse to the point where she was struggling to breath because it hurt.  I called the hospital just to check in and see if we should be concerned.  She did have a rough afternoon afterall.    The residant neuphroligist did suggest we bring her in just to make sure.  I was not even off the phone yet and dad was taking her, crying out to the car.  So off to the ER we go.  They could not get a blood pressure reading becaause she was in so much pain she was screaming.  They got her a bed and she was able to lay down, with a warm blanket of course.   She loves her warn blankets.  This seemed to relax her a bit and she calmed down.      Eventually the pain started to subside,  her blood pressure was 118/58.  A little high but normal.  They did another urine sample, ultra sound of her chest, her stomach, and an EKG.  No Concerns.  Dr Filler did order a stronger pain med that he wants her to take for atleast a week.  We have to monitor her diet daily and get her to drink more water.  She is already used to a restricted diet so it should not be that big of a deal.  FINALLY back on the 401 for home at 10:30.  What a long day!!!!!!   I was so Emotionally drainer for the rest of the night and the whole day afterwards while attending a work meeting all day in Chatham.  Then IO took the girls to Pat and Hanks for dinner and enoyed a family night out at the movies.  We need to do more of this for sure.  It was a fun outing after a long day.  Breanna has only had one small dose of upper stomach pain but it was gone as fast as she told me it was there.  She is feeling good and ready to get on with her day.

Another day!  Another Tear! Another survival!

Small SetBack due to Reflux

Breanna continues her fight every day.  She is your typiocal teenager playing outside with her friends and going to school everyday.  Other then all the pills she has to take and the nightly 10 hours of Dialysis.  Her blood continues to come back with no concerns.  Herphosphate was a little high this week but no concerns.  I got the results from her ultrasound regarding the bladder reflux.  She basically needs a new bladder!!!!!   Her post void residue was high at 358cc and ger curve itself was abnormal (staccato).  Her urodynamics showe a good bladder capacity but slightly high filling pressures between 30 to 40 cm h2o.  The concern here is her pressure is rising  early in her fill.  We do have to repeat this test with an ekg.  Also we have to have an MRI.  Once we repeat this test we will have some more answers to this issue and we will have more info on what needs to be done to fix the problem.  Worse case will be she will have to have a CIC.  Which is a permenant catheter put in so that she has a full void.  Not a good option but it is an option.  Right now we are trying to train the blasser to have a full bladder and more frequent bathroom trips for Breanna.  This will be a struggle for her as she usually only  going to the bathroom about 3 maybe 4 times a day.  We need to bump this up to 8 to 10 trips.  
She continues the fight while mom stresses about everything that is going on.  I hate that tjhsi is happening to one of my babies and I look at Breanna for the strength to get through day by day.  

This was one of the visits while in London from two of the players from the London Knights!!!!!!!

The Special Mother

	Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew." Finally He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!" "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side". "And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice." Stefani...............after you wipe away the tears.....this poem wll get you through some tough times. I love you very much. You ARE a great mom. You ARE a strong woman. You ARE just fine, even through the moments of sadness and emotional turmoil! You ARE the right mother for such a journey. Breanna is a lucky little lady to have been chosen for you! xoxo Kimberly

First Clinic visit

Relieved!!!!!  That is how I feel after our first visit.  Dr Filler has some concerns about her Blood Pressure still being a little high so he has prescribed one more med. for Breanna to take.  Breanna is holding in water so she is a bit bloated all over.  Not to concerned just making some minor adjustments. Limit fluid intake to 2 litres a day.  We have to  watch her suger levels as they are starting to go up,  She is still in the normal range but it is climbing.  And her sodium level is higher then we would like so we know we have to watch her sodium intake.  We have known this from the beginning.  We will be back in two weeks for another clinic visit and she has another test,  I forget what it is called at the mment but it is to see which valve is not working properly in her baldder causing the Bladder Reflux.  That will not be a fun test.  But she will get through.
Tonight we have increased her Dialysis fluid so that more fluid will come off.  Hopefully this helps.  But she had a great night.  No Crying at all.  Just a small,  oh it hurts mom.   She is sound asleep which is where I should be.  Goodnight.  Tired today!
    

mom is having an emotional day!

Breanna is doing great. Her blood pressure is good, she is gaining her weight back that they think she lost.  But mom is having a very very emotional day!!!!   Could it be everything is catching up with me?  Could it be the overload of information?  I have no idea.  Just one of those days.  My MIL has been admitted into hospital.  I can't really hang out there with her in  fear I will bring something home for Breanna to catch.  Although I did get up to see her quckley today and had a few words with the nurse in charge! Tell me or try to tell me I can't look at her chart,  go ahead and try to stop me.  Just need to make sure we are all on the same page.  Nothing but the best for my family.  Not only are we our childrens advocates, but we are fighting for our elders as well.  I can tell you one thing,  the Doctors and the nurses are not going to like me when they see me.  I want answers and I want them now.  Just off today.  If you look at me I might cry.  Can't help it.  Thats just the day I am having.  I am sure it will pass. And I am sure it won't be the last one. 
Breanna is hangin out with Grama Barb today.  I thunk they are making oatmeal cookies. And grama made sure she had the right snacks for Breanna while she is there.   She loves her Grammy Barb.