Tuesday, August 07, 2012

The Saga Continues

I talked to the urologist today regarding the report from the lab in Chicago that analyzed Jack's urine.  According to the report, Jack has "extremely" high calcium in his urine, low citrate and lower than normal volume for a 24 hour period.  The question is "why?" That's where the nephrologist comes in.  For some reason, I'm not all that confident that we will get any answers to the "why" other than, "we just see this sometimes" and then they'll set about trying to treat it.  Call me a pessimist.  You'd be right.

We see the nephrologist next week.

Removal of the new stone that has formed still remains an issue.  The end of June, the stone was already 1.5-2cm.  Keep in mind that the majority of stones that send people screaming to their local emergency room are measured in terms of mm.  We have to get yet another CT scan to see just how big the stone has grown and then the urologist suggest going in again via the percutaneous nephrolithotomy to remove the stone.  Another big surgery, another 5-day hospital stay.  The urologist mentioned that we could try lithotripsy, but because of its size, it would require multiple treatments and he's not sure it would break up the entire thing.  I agree that the more extensive procedure is the way to go because I just want the thing out all at once.

More than one doctor has told me that the stone shouldn't be hurting Jack because it's not trying to pass through anything, it's just sitting there in the kidney.  I'm not convinced.  Our bodies do not like foreign objects in them and while Jack may not be in excruciating pain at the moment, I can tell he doesn't feel well.  He hasn't felt well for the majority of this year, and it's breaking my heart.

In the scheme of things, I realize things could be much worse than a kidney stone.  But, the fact is - there is very little I can do as Jack's mom to make a difference in his life given his disease.  I can't stop the disease from progressing, I can't do anything to help him walk, talk, eat or breath on his own.  The only thing I can do - and the one promise I made to him six years ago after his spinal fusion surgery, was that I would do everything in my power to make sure he doesn't hurt. Seeing what Jack went through with the spinal fusion surgery brought me to my knees and I vowed to protect him from having to endure that kind of pain ever again.  It's why I'm wicked protective when I turn over his care to anyone else.  I've not been successful in keeping my promise this last year and it makes me sad.

I hate that Jack has to endure another procedure and, to be honest, I'm losing confidence in having this dealt with locally.  As his urologist reminded me today, things didn't go as planned last time because they perforated his kidney.  Shit happens, I get that. But, what if it happens again? I'm once again struggling with whether to have this dealt with here or in St. Louis.  I hope to talk with the St. Louis urologist before our appointment in October.  Depending on what he says, we might just wait until we are in St. Louis to do anything about the stone.  I'll just have to take my cues from Jack as to when, where and how we move forward.


Speaking of Jack's spinal fusion surgery, it's hard to believe that it's been six years since the surgery (on July 28th).  More unbelievable is that I have been blogging for six years.  That's crazy!  And some of you have been reading for all six of those years!  I never intended to become a blogger, but once I started, I found that sharing my experiences and my thoughts was both cathartic and a great way to meet some amazing people. It's been a ride and I'm thankful for all of you who have ridden alongside us, offering your unending love and support over the years.

A reminder of what Jack went through six years ago and why I made my promise to him -

How's that for some hardware in your back?

As straight as they could get him given the quality of his bones

This face pretty much says it all


And, speaking of reminders, here's another one .... For The Record  


Sarah said...

Oh Ann...my heart is breaking for you. First let me say you haven't failed Jack. You haven't left him there in pain...you've listened to him this entire journey and this last year. You weren't able to pin point his pain as quickly as you probably wanted to, but you listened and acted. It was a HUGE leap for you to go to PCH...HUGE!!! I'm so terribly proud of you. If you ultimately decide to go back to SLCH that's ok. I know you are comfortable there. But my dear friend...you haven't failed on your promise to Jack. It sometimes takes longer than a snap of our fingers to fix these problems for our precious kiddos who are never text book. Lots of love and hugs as always! I'll cry with you any day you need me to...

Melisande said...

You are an exceptional Mom & Jack knows that!! Xoxo!!

Christy said...

Hugs, Ann. Really big, big hugs. And beers. In frosty mugs. You've both had such a tough year. I really hope it turns around soon. And I know you might not always feel like it - but you're doing a great job.


Susan said...

Oh Ann. It's so natural to want to protect our kids from all pain. We can't always do that. Jack has surely has had his share. I think you have done everything you can in this situation, just like you vowed. What could you do differently? Nothing. I'm sorry it's been so tough this last year. Big hugs. XOXO. I love reading your blog and hearing how you, Jack and the rest of your family are doing. I am glad you've kept at it.