Friday, December 16, 2011

Two More "Tubies"

We have been trying to potty train Catherine for almost three years. We were told not to start until after chemo ended (in March 2009) and after her bladder was repaired (for the first time in April 2009, then again in November 2010).  We had no success potty training Catherine.  We were hoping peer pressure may help.  In kindergarten we eased up on the potty training and let her wear pull-ups to school, but over the summer we tried to ban pull-ups.  We cleaned the floor several times a day.

But in first grade we believed that we really needed to get her potty trained.  If not in first grade, then we'll have a second grader in pull-ups, then a third grader, etc.  She had been off chemo over two years.  We had the confidence that we could do it because I potty trained Sabrina in just three days (using a "boot camp" strategy a friend told me about). 

Catherine's school agreed with us and assigned a full-time para-pro to her to help her.  The para-pro kept meticulous records and timed every single trip to the bathroom.  She took her hourly.  Catherine almost never initiated, but usually would go if you sat her on the potty.  But, she still had accidents almost every day.  The school, county staff, and I had several meetings about this process.

By late September, six weeks into school, Catherine was still not the least bit potty trained.  At our quarterly Brain Tumor Clinic meeting, the oncologist told me that there must me something anatomically wrong with Catherine's bladder.  She said every child gets potty trained in a few weeks, even ones who are severely cognitively impaired.  So, we scheduled a meeting with the urologist.  He agreed there is likely something not working correctly, but needed to do some specific testing in the hospital to determine what exactly was happening inside of her.

On December 7th we went to Scottish Rite for the tests.  They revealed that her bladder does not contract when she tells it to, the neck of her urethra has too low leak pressure (should be in the 80’s and is in the 10’s) and her colon also doesn’t do what her body tells her to.  Catherine's big spinal tumor at birth (called a saccrococygeal terratoma) and her tethered spinal cord likely caused this.  The urologist said that he does not think she will ever be potty trained.  He said she has a neurogenic bladder and colon (which means the nerves serving those organs do not work).

One solution is to catheterize her 4-6 times a day through her urethra.  However, this would not fix the colon problem and, due to the low leak pressure, she would still leak.  Plus, there is a dignity issue.  Catherine is starting to develop modesty and we don't really want Mommy, Daddy, Grandpa, school nurses, and babysitters catheterizing her this way.  By age 8 the doctor said that she can catheterize herself, but that is still a year away.

There is also a surgery which can use electrical impulses to reconnect her nerves with the bladder and her colon, but she is not a candidate for that surgery because her lower spine has so many issues.

Another solution, and the one we have chosen, is called a Mitrofanoff procedure.  The surgeon will use her appendix to create a second urethra.  Your urethra (I have learned so much anatomy from parenting Catherine!) is the tube that drains urine from your bladder out of your body.  This second urethra will be at the top of her bladder and will exit her body at the bottom part of her belly button.  Then, several times a day we will stick a tube down this "second urethra" and hold the other end of the tube over the toilet.  She will urinate in this manner for the rest of her life (unless medical science invents something better).

To help with the leaking, they will take either cadaveric tissue (from a dead person) or tissue from a cow and wrap it around the neck of her urethra, where it joins the bladder.  This is called a sling and should prevent leaking. The surgeon asked us during our meeting if we had a preference of what type of tissue they used. 

Thankfully the nurses had taken Catherine out of the room and were playing with her.  Robby and I were still reeling with the onslaught of bad news and information.  Then the surgeon asked if we wanted cadaveric or bovine tissue in our daughter.  I wanted to say "neither, can't she just be healthy?!"  But, I learned long ago that Catherine's body is not "healthy" and that is just the way it is.  On the spot the only response I could come up with was "whatever is likely to not be rejected by her body and last the longest."  Robby said he didn't care either way, that she already has a metal coil in her heart and a plastic tube in her stomach. 

Lastly, Catherine has been constipated her entire life. We give her stool softeners, medicine to make her colon contract, etc.  She has had several impactions (where it is just stuck in there).  One of them was removed surgically.  Usually we can handle the impactions at home with enemas and lots of laxatives.  It is a horrible situation, very painful for her.  Sometimes she gets diarrhea for days, and so we have to worry about dehydration.  Needless to say, these bowel issues are very hard on a child who would prefer to play.

Last year some of the bacteria from her colon penetrated the membranes of her colon and gave her a horrible e coli infection.  I have literally never seen her so sick before.  We carried her to the ER and she couldn't even hold her head up.  They treated it with massive, strong anti-biotics.  Within a few days, she was fine.  But, the fear that she will get e coli poisoning again is ever present.

So, the third thing the surgeon is going to do is use another portion of her appendix in a procedure called MACE.  This will create a hole in her tummy (called a stoma) which will be on the right side (opposite of her g-tube).  This hole will go into the top of her colon. We will then, once a day, sit her on the potty and put a saline mixture into the stoma.  This will irrigate her colon.  It is like an enema, but from above instead of below.  Therefore, it will be less painful (hopefully no pain), more dignified, and something she can learn to do on her own.   

She will be in the hospital for a week having all of this done.  The surgery date is set for January 18, but we have to go in the day before for "bowel preparation."  Then she will have 3 weeks of recovery after that. 

We have explained to Catherine that she will get 2 more "tubies" in her tummy.  She asked me how long they will be there.  I told her "a long time."  Last night when we were doing an enema for her, she pointed to the right side of her abdomen and calmly said "after the surgery you will do the enema here, right?"  It is amazing how much she understands.  It is amazing how much she can accept and minimize.  It is just not a "big deal" to her.

The surgeon asked us if we were OK with all that he thought needed to be done to Catherine.  I told him that I hate the fact that these problems will plague her for the rest of her life, but it is not like we have not significantly intervened medically with Catherine many times already.  It seems like every aspect of her body has had some type of surgery or treatment.

The words normal and healthy are so strange. Every person who is expecting a baby prays fervently "I just want a normal, healthy baby." That was my prayer when I was pregnant. But, that is certainly not what God gave us.

But if I had prayed for "a sweet, loving child with the inner strength to accept any and all challenges she faces with dignity and perseverance" then I would have gotten exactly what I had prayed for!  Catherine understands why she is getting these new tubies, has not questioned it at all, and seems to understand that it will be better for her. 

Other than a few comments, I don't think Catherine has thought about these two new tubies much at all.  She is far more concerned with what Santa will bring her for Christmas, whether she can wear a ballet costume to the Polar Express ballet we are attending, and if her sister is sharing her princess dolls.  Those issues elicit real emotion and concern from Catherine, not the failure of her bladder, urethra and colon to work properly.  If only I can learn from Catherine's example ...


Anonymous said...

Victoria - This is the most precious blog you have ever written. I love you, Robby, Catherine and Sabrina. Little Catherine should be an inspiration to all of us.

Thru My Camera's Lens said...

So proud of my girls.

Anonymous said...

she is so sweet, and seem to understand it all.

Anonymous said...

Thanks for directing me to your website. I hadn't checked it in a long time. I am now an email subscriber!