Diagnosis

Some of you may remember when Ari was 3 months old and went into the OR to have his esophagus connected to his stomach. We were so excited.  I wrote in our Care Page about 3 possible outcomes, mentioning a spit fistula as the worst case scenario followed by "but THAT will never happen".  Of course we all know by now, that was precisely the outcome.

Did I not learn my lesson?!  Going into yesterday's test, I had a similar list of possible outcomes, worst case being a diagnosis of 1- no chance of bladder continence, 2- signs of kidney issues, and 3- the need for catheterization.  

My conversation with the urologist was long and medically detailed. 

• Ari's bladder has impaired compliance, meaning it does not contract a lot.  He's had this study done twice and both times it didn't contract at all.
• His bladder is enlarged, holding about 250 cc or over 8 oz of urine before it starts to leak out- something called overflow incontinence.
• The rest of his urine is retained in his bladder, causing bacteria and pressure.
• His urethra in extremely narrow, making it all the more difficult for the urine to release.
• He has urine refluxing in the left ureter, backing into the kidney.  This can lead to long term kidney problems, especially if bacteria is present.

What we can do:

• Ari needs to get something called a Mitrofanoff.  It is a discrete stoma, or hole, through his abdominal wall and into the bladder, using his appendix as a conduit.
• We will have to cath him through the Mitrofanoff every 3-4 hours.
• The doctor will laparoscopically correct the urethra and ureter.
• He has to stay on a daily antibiotic to fight the introduction of bacteria.

There's a problem... Ari has something called a cecostomy.  It is a "button" in his intestines that we use to manage his bowels.  Everyday, we make a saline mixture and flush the stool out of his bowels.  Imagine a 3 year old sitting on a grown-up toilet for an hour each day.  If we push too slow, the stool gets stuck, if we push too fast, he cramps up.  We have to use just the right amount and inject it at just the right speed. 

You may be wondering why this is an issue.  Well, a year or so ago, when Ari first got a cecostomy, we had to make a choice regarding his appendix.  His surgeon wanted it for the cecostomy (making it an apendecostomy to be exact) and had a discussion with the urologist who wanted to save it "just in case" he ever needed a Mitrofanoff.  Larry and I made the decision and it went to the surgeon.  Six months later, that apedecostomy was reversed because the button kept getting painfully caught on the waistbands of his pants and a true cecostomy was created.  We ended up revising that too, but that's another story.

The surgeon tried to save as much of the appendix as he could, but we are not sure there is enough there for the urologist to use it.  His plan "B" is to use part of his colon, but remember, that is deformed too.  

All the surgical details aside... we're talking about having to cath him every 3-4 hours for as long as we can see into the future.  That's a big commitment.

I hung up with the doctor and called Larry.  We went over the details in a very matter of fact manner.  The details are the most important part... emotion can come later.

As we both sat in our offices, a text conversation began.  One may think it would be dramatic and emotional, but that's not how we deal with things.  We pepper everything with a little humor, a little sarcasm, and an understanding that we're in this together.  Here's how it went:

Me: The more I think about it, the more I want to puke, cry or hide.  Our baby needs a break!!!

Larry: I feel like that too... we need to do what keeps him healthy.  Our options are limited- 10 years from now he may be fine... with new surgeries, medicine, etc... I may be dead, but he will be fine.

Me: Lol. Don't leave me.  I'd end up in the psych ward and the kids in DFCS.

Larry: I'm headed that way.

Me:  You have no idea. 

And that was it.  Back to work, though a little harder to focus.  When I picked Ari up today, we hugged for a long time.  I was so happy to see him.  Apparently he was happy to see me too, because he did not stop talking for 1 second between that moment and bedtime.  It was a great reminder that he's a normal toddler and we try to cherish every minute of it.  Although it would have been nice if he could leave his sister alone for just a few minutes so she could do her homework.  :)

We're still going to wait for the spinal MRI to make any decisions on surgical timing, as it may have to take precedence.  I took Ari to get new shoes last night, his right foot is an 8 and left foot is a 9 1/2... confirmation of the spinal cord starting to re-tether.

Only time, and an MRI, will tell.