Doors

I can't believe I let the entire summer pass without an update!  There is so much going on in our family.  We're facing a difficult time right now, but more on that later...

I'll pick up where I left off... Ari had urodynamics to test his bladder function.  I hate that test.  It's painful, traumatizing (for Ari AND us!) and not exactly accurate... it's a snapshot in time and not indicative of what happens before or after that moment.  Imagine Ari with a catheter taped into his mitrofanoff (the hole in his belly button that leads to his bladder) and a probe taped into his anus.  Yep... you read that one right... wide awake, no anti-anxiety meds and a probe up his bottom.  Liquid is them pushed into the mitrofanoff, filling his bladder.  The purpose of the test is to check for the point where urine (or the fluid being forced in) leaks out.  I'm here to tell you that my son leaks urine ALL. THE. TIME.  It constantly drips out, even during his catheterizations or right after emptying his bladder.  Add a little bit of exertion or running around and he doesn't stand a chance of staying dry.  Yet, every time he has this test, he tightens up so much due to the discomfort of the probe that he holds the urine in.  It's a reaction and not something he can control, but it happens every time he has urodynamics.  So... according to the study, Ari has bladder control and he can hold over 500 cc of urine, which is completely way too much for a child his size.  Average should be about 240 cc.  The large volume in his bladder is so painful for him.  I actually stopped the test before he leaked anything due to the pain he was experiencing.  Bottom line is we've done this test repeatedly with the same result and then the same leakage occurs.  Trust me when I say he cannot feel when he has to urinate and cannot feel the leakage, but he certainly can feel the pressure of a bladder artificially filled with a dangerously high amount of fluid without the ability to release it on his own.  I'm not allowing him to do this test anymore... at least not for a while, which is fine because we decided that waiting is the best thing for him anyway.  His scrotum is too small for the pump that is needed for an artificial urinary sphnicter.  We are waiting until he grows physically and emotionally before taking that step, which will be in 5-7 years.  Plus, who knows what medical advances will take place in that time period?  Decision made, it's time to move on.

We have purchased a couple of things that have made a positive impact in managing Ari's incontinence.  The first is a medical watch that vibrates when he needs to use the bathroom.  As I mentioned before, he cannot feel when he has to urinate.  The more time that passes, the more he leaks.  This watch is a gentle reminder that he needs to be catheterized or sometimes he'll even go to the bathroom and can force urine out the traditional way.  He never fully empties his bladder when he does this, but it helps... especially when he is at a friend's house or away from us for an extended period of time.

The second thing we purchased was a new type of underwear made by Huggies called Tru Fit.  They look like real underwear, but have a plastic, elasticized lining that holds a disposable pad.  I cannot begin to tell you how much of a positive impact they have had on Ari's life!  Here's a picture... He's so proud!

There's only one problem with wearing the underwear instead of a pull-up... bowel accidents.  Just typing the words brings on a rush of emotion for me.  Our lives revolve around Ari's bowels.  We're still doing his flush via cecostomy, the button on the right side of his body.  It doesn't matter if we flush him every day or every other day, he still has accidents.  Can you imagine scheduling an hour in a bathroom every single night?  Liv has practice and we have commitments, yet we have to find the time to do it.  NOW imagine dedicating the time and then your child has unexplained bowel accidents between flushes.  Sometimes it happens right after a meal and other times it's just out of the blue.

There is one trigger that we know for sure and that is overheating.  It's August in Atlanta!! Of course it's hot!!  All it takes is one outdoor game with the neighborhood kids and everyone knows what's coming... Ari is going to poop... and once it starts, there's no end in sight.  The only way to get him relief is to do his flush again.  His bowels have us trapped.  I pray every time he gets in a pool that he doesn't have an accident.  I pray that the kids at school don't know what is happening and that he doesn't become "the kid who poops his pants".  I pray that we can go out to dinner without using my entire supply of pull-ups before getting home.  I pray that I can change him and remove the acidic poop from his bottom before he goes again, uncontrollably, on the floor of whatever bathroom we're in.  I pray, I pray, I pray... and you know what? It still happens... way too often.  I realized that God is not going to control his bowels, so now I pray for guidance toward the solution.

I truly believe there is a connection between Ari's autonomic nervous system, overheating, and gastric dumping.  I'm on a mission to find the root cause of the problem, which may, in the end, just be the way he is made.  I am going to help him live a better life and find a solution for him, even if it means after all efforts are exhausted, going back to a colostomy.  I want him to have the freedom of running around and being a kid and simply not worrying about having an accident.  This is an ongoing mission and I'll keep you (promise!) in the loop as we progress.

So many other things have happened recently.  Ari started 1st grade and Liv started 5th.  Once again, I am pleased and humbled by the accommodations the school has made for Ari.  Here's a picture from the first day!

Ok, it's a little blurry, but I love that they are laughing together.  Liv's cowboy boots are cut out of the picture, but totally made the outfit.  She's growing up!

And now for the difficult time I previously mentioned.  Remember the whole "financial nightmare" post from April?  Yeah... if only that's where it ended.  In April, Larry's company reorganized and he was promoted.  There was an opportunity for us to move to California and for a multitude of reasons, we decided it was not the right thing for our family.  I'm grateful we made that decision, because in the beginning of July, they reorganized again and Larry was let go.  Let's put this into perspective... recently promoted, successfully managing a team, attaining prominent new customers is a vertical segment where they didn't have a presence before, got along well with everyone in the company... the list goes on.  So why, you may ask, did this happen?  I have my own theory and it's one that's not unfamiliar to us.  I think our family was too expensive for this small company to insure.  We can't prove this, but I know benefit review was late June for open enrollment in July.  Ari's durable medical equipment and surgeries were not cheap in 2013.  This happened before, when Ari was still in the NICU.  At that time, the company actually told Larry that we were too expensive to insure and held his commissions, severance, and insurance over our heads in lieu of signing a paper waiving the right to sue them for wrongful termination.  This stuff really happens... hard to believe- right?

Anyway, what's done is done and we're left in a situation with no income and no insurance.  Sure, we can always do COBRA retroactive to August 1st, but the Company's new plan started on this date as well and has a deductible of $6,000 (minimum), plus $1,600 per month premium, plus copays (50% for DME).  That's a lot to pay when hopefully new employment and new benefits are just around the corner (I hope!!).  Our DME costs have gone down significantly since we are no longer using the g-tube (I'll update that in my next post!), so we are only purchasing catheters right now.  We have self-payed for all medical care and supplies so far, but it can't last for much longer.  One trip to the hospital and we'll be in a very difficult situation.  This is the part when many of you will suggest looking into ObamaCare.  Let's just say I looked and even tried to move forward with it and it is NOT an option.  I'll go into detail about that in my next post as well.

Surprisingly, our spirits are high.  The kids are happy, our marriage is strong, my parents are here and amazingly supportive, and we are starting attending  Northpoint Community Church where the current series addresses "what to do when there's nothing you can do". It's so pertinent to us right now.  We've overcome so many challenges as a family.  I'm able to look at this time and not feel like the world is ending, instead I have a feeling that a door is about to open for us... one that will lead us in a new direction and hopefully bring contentment and security to our family.

Until next time...
XOXO,
Jodi