Eight Year Old Kidneys

I feel like I’m living in deja-vue. 

Am I? 

I’m not sure...

Since surgery 2 years ago, my memory has really gone downhill. Mostly short term memory issues. I find myself wondering “Did I actually DO THAT, or was I just thinking about doing it? Did we HAVE that conversation, or was I just thinking about bringing it up?” UGH...

Anyway... this time it REALLY is Deja-vue. I know this, because I’ve searched through the Dr’s letters, my own notes, and searched my memory, AKA blog. 

What I’m about to share is not documented anywhere, yet I feel like I’m having the same reaction to hearing it again, but actually for the first time. 

Jackson and I had such a whole-heartedly fun drive to CHOP the other day. He chatted almost the entire drive. He snacked on mozzarella sticks. And as we got closer, he chugged down his water bottle. When we arrived, his ultrasound took 45 mins... twice as long as usual. But, he did not mind his “massage”. 

Then we met with his urologist, who entered the room different than usual. He asked a lot of questions and didn’t make much eye contact. Not in a rude way, in a way where his eyes were recalling and sorting things. And then, he said it. He said it kindly, matter-of-factly, and also in a way that was trying to protect me. Then, he handed me a tissue box. 

I’m not even the patient.

Jack had a few questions for him. Sometimes I forget that the little guy sitting there, rolling his Hot Wheels, is listening. Computing. Wondering. Feeling. Asking me why I’m tearing.

It’s time.

Time to intervene. Time to be more aggressive. Time to preserve his kidneys. 

Time to add catheterizing to his daily routine. 

Add that to the list of things that completely annoy Jack every. single. day. “Drink. Drink. Drink. Pee. Pee. Pee. Double void. Take your medicine. Drink and pee some more. Put the extra pads into your diaper. Drink some more. Blah, blah blah, blah blah.”

Dr Shukla explained that his kidney function has (again) declined 0.1. This sounds negliciable, except that the highest that it is supposed to be is 0.4 and now he’s at 0.8. (0.6 last Spring, 0.7 this fall.)  He explained that his US doesn’t look “much worse”, but that every 6 months the US looks “not much worse than 6 months ago”. Multiplied x 5 years = worse, Period.  At this point, the swelling in his kidneys (hydronephrosis) is at a point where the Dr is afraid of him losing precious nephrons, spiraling him into kidney failure/dialysis/transplant. 

His initial plan is to cath Jackson each night and leave it in while he sleeps. This would, in theory, allow his entire urinary system 10 hours of “rest” each day. It would lower the amount of fluid pressure inside of his kidneys, while allowing the urine to flow freely out of his body.  I say “theory” because we have attempted 2 separate 14-day rest periods for his system in the past couple of years. The Dr had temporarily put in a suprapubic tube (more permanent catheter through his belly) that flowed freely. Neither of these times were successful. The suprapubic tubes irritated Jackson’s bladder terribly, causing constant bladder spasms. And one of the tubes left him with a UTI. In neither attempt, did we see any improvement on his ultrasounds or bloodwork.  I also use the term “theory” because Jackson’s urethra has had multiple deformities, surgeries and scar tissues. Technically, hyposoadia, chordee, urethral atresia, post urethral valves, strictures and other surgical scar tissue- most have been surgically corrected at this point. The simple idea of inserting a catheter may not even be physically possible. 

After the Drs eyes were done recalling and sorting everything, he concluded that a Mitroffanoff procedure is probably going to be the best plan for Jackson. This is because of his urethra and the fact that he has multiple bladder issues as well (Thick-walled bladder, Misshaped bladder, bladder diverticulum, reversed vesicostomy, bilateral megaureters, bilateral hydro-uretal-nephrosis and a duplicated kidney.) I’ve researched the Mitroffanoff before, because the term was quietly thrown around at the last two visits. This time, it was stated, charted on his record and discussed. Finalized. 

You can google it, but I haven’t found a great site yet. I’ve pulled the basics from multiple sites. The basic idea is that part of the appendix is used to make a “tube/tunnel” from the bladder to the belly button.  A catheter would then (‘painlessly’) be inserted into it each evening, the catheter tubing taped to his belly and attached to the catheter bag. The tunnel is considered one-way... BUT so was his vesicistomy. He spent week after week in the hospital with kidney infections before they closed up his vesicostomy, which was obviously not one-way. 

The end of the conversation ended with the Dr wanting us to see his new kidney Dr soon (appointment in 3 weeks) and if he’s ok with it, surgery can wait until the fall. I’m not really sure why he then backtracked and said it could wait- part of me thinks that it was for MY sake, to give me time to wrap my mind around it. I was obviously shocked and had a lot of questions... 

~It is a MAJOR surgery.

~Once it’s done, he’d no longer have an appendix.

~The Mitroffanoff channel would not necessarily be FOR EVER. If it wasn’t needed any longer, for some reason, it would close up over time.

~It would not impact his ability to bathe/swim/wrestle.

~Pre Op and Post Op care is intense- nothing by mouth for 1-2 weeks. 

~I, obviously, would be the one doing his cath.

~It should not predispose him to infections because it’s a “one way valve”.

~The appendix tube will still act like an appendix and secrete mucous- daily irrigation’s will probably be needed.

~THERE IS NO GUARANTEE  that the procedure will buy us any time with his kidney health. 

And then, here’s the Deja-vue...

I HEARD what he was saying. I HEARD it. I wasn’t just listening to him. I HEARD what he was saying. Every cell in my body absorbed his message. I HEARD it. I did. And I wondered how many other times I listened but didn’t HEAR the message:

Keeping his underpants and night time diaper is ABSOLUTELY NOT IMPORTANT.

It is actually contrary to what is best.

The more the pee keeps moving, the better scenario for his kidneys. With his issues, his kidneys make much more urine at night. The quicker the urine is out of his body, the less impact the urine will have on his kidneys.

Layman’s term: PEEING THE BED IS GOOD FOR HIM.

I am terribly embarrassed to admit this- since last summer, I’ve been promising Jackson that if he proved the Drs wrong one more time- that if he could, in fact, not pee the bed for his entire life- that he and I would fly to Walt Disney World. He had to have dry diapers for 7 nights in a row, and then we would grab a flight the following week. I bribed him. I encouraged him. I cheered the 1 night that he pulled it off. I was excited for his future. 

You realize what that means, right? The implications of my actions? The person that Jason entrusted his son’s medical care to. The person Jackson trusted to protect him. The person my kids’ assumed was doing good to their brother. The pediatric nurse that provides 100% of his care. 

THAT person - me!!!!

Was 100% WRONG. Causing him harm. Encouraging him to do the impossible, the hurtful impossible. 

Don’t get me wrong- I thought that I was doing my best. NO- I WAS doing my best. I just totally missed his message. I listened, but, somehow I didn’t hear it right.  I’ve wondered if denial was a part of it, but I don’t think that was the case. I think, I just messed up. I think, I was just human.  I think, I’ll learn from this.

We knew this day would come. We knew our little miracle boy would face more issues as he matured. We knew his growing muscles would put more strain on his kidney function.  You know what I didn’t know though???

I did not know it would happen this fast.

I’m still dealing emotionally with when I was pregnant with him, and his birth, and his 18 months in/out of the hospital, and his confusion as to why he takes medicines and wears diapers. 

I guess we’ll just keep forging ahead. 

And praying.

And loving Jackson.

And being there to comfort him- when he lets us, because (apparently) 8 year olds don’t hug and kiss their Mom’s anymore. 

And, I suppose I can treat him to a day or two at Disney, just because:)

*****

We saw Dr Larosa, his new Nephrologist. His kidney function is around 60%. A normal creatnine at his age is 0.5, his is currently 0.8.  The Dr is very comfortable waiting until September to begin cathing. He will talk to Dr Shukla to see what his exact thoughts are on the benefits of the cathing process. He’s seen it very successful for some kids, and not successful for others. 

All in all, it was an optimistic appointment!