Monday, February 4, 2008

Here We Go Again...

R's had another 'episode'.

If you've been following along, as I know some of you have, you'll remember that over the last year and a half, R's had some kidney problems. The short story is that his left kidney is in pretty bad shape due to what we think is UPJ Obstruction. But not just any old UPJ Obstruction, an intermittent obstruction. We suspect that this has been a problem all of his 8 short years, but due to the nature of the beast, it's been missed until now.

We're seeing a Urologist that we really like (not that we've had the opportunity to interview a panel of them or anything) at a hospital that we're blessed to be close to. Every few months, we head up there to have R's kidney scanned to see if there have been any changes. So far, so good.

My mission, that I chose to accept because it seemed to be the least of two evils, is to try to spirit the child to the nearest ultrasound machine at the peak of an episode of kidney pain. Now, if you have young children, you may be aware that sometimes they're not too adept at describing different types of discomfort.

That's challenge Number One: accurately identifying an episode before it passes and not blaming it on too much pepperoni or a wee bit of constipation. Luckily for me, there was no mistaking it this time.

Challenge Number Two would be finding an ultrasound set-up (available locally for your convenience from 8:30am to 4pm) before R's pain subsides. This kind of goes against my initial reaction to pain in one of my offspring. I tend to be a Fix It Now kind of mom. However, I do know that this step is important to identifying the specific problem that we're dealing with so I try to play along.

Of course, none of this is textbook or simple. The Urologist says he knows for pretty-much-absolutely-certainly-for-sure that UPJ is what we're dealing with. Yet we haven't got absolute proof. Mm hmm. R cannot seem to coordinate his 'episode' with regular business hours. I want absolute proof before anyone attempts to 'fix' the problem.

So we found ourselves in the local Emergency Department at 2:11am last week. It was a comedy of errors that I would be happy to explain to you at a later time. Of course, there's nothing Emerg can do at 2am, but I'm under strict instructions to try to catch this episode on film, so I'm doing my best. At any rate, we got the ball rolling. We were on our way home two hours later with an emergency ultrasound requisition and some lab work to be done. The worst of R's pain has passed and we got a couple of hours of sleep.

Back at the hospital at 10am, we were spirited in for an ultrasound. We dropped of the lab work. Did I mention that this was a Friday? No results available until Monday morning.

The comedy of errors continued as I dealt with trying to track down definitive results of lab work. By Wednesday, things had settled down. R was beginning to feel better after existing on water and Crush freezies for 5 days. I knew he wasn't in need of antibiotics for a kidney infection. I'd been in touch with the Urologist and his clinic nurse who were both very helpful. Crisis averted until next time.

Next time will involve a dash to the nearest functioning ultrasound equipment. That likely means a looooonnnngg drive with a kid who does not want to be strapped into a seatbelt while I try to deliver him and his kidney to CHEO in the wee hours of the night. It's a strange dichotomy: good that we're able to access the services that we need. Yet, not so good to be hoping that a child's pain will last so the trip is not wasted.

The very likely next step is surgery. I know this. I've put the Urologist off for 6 months and that clock is quickly running out of time. Not being mentally nor emotionally prepared to have someone I know as little as the Urologist babysit my kid let alone cut him open, I think I am approaching this in a remarkably uncharacteristically practical way. So far I have asked Brian to book the day of R's next appointment off work. And I've told my extended family to plan on entertaining K for the day. That's enough for now, me thinks.

4 comments:

oom said...

Oh...I was so hoping it was a 'fix itself as he grows' sort of thing :-(. You know I am here if ever needed. {hugs}

Penelope said...

Wow, Bonni, I'll be thinking of you and your family. I hope that all goes well. Please keep us posted.

Romany said...

Bonni,

I'm so sorry you are having to deal with this. I think it's a very good idea to have Dad at the next appointment with you. Dr's seem to deal with parents in a completely different way when a Dad is there.

jugglingpaynes said...

Arrgh! I'm kicking myself for not reading this post last time I stopped by. I was rushed and distracted. I hope R is doing better now. Belated hugs.

It is horrible to see your child in pain. If you are up to it, I suggest practicing some deep breathing exercises a few minutes every day with R. K can do it too. It's always good to involve the siblings. The breathing exercises will help him have something to focus on if he has another episode. If you want details, you have my email.

Take care of yourself. {{hugs}}
Cristina