Stuff has happened. Finally. (An overdue update)

On the one hand things have been incredibly dull and uneventful since my last update (almost 2 months ago — sorry about that). But on the other hand, what happened has been pretty big.

So, let’s start with the edema — the Achilles’ heel, and attention stealer, of the last few months. It’s decreased significantly, first of all. Which is great. But it’s still there. After a lot (we assume) of discussion and deliberation (none of it was shared with us — who knows, maybe it was a couple of text messages), The Powers That Be at OHSU decided to do nothing about it.

Which sounds snarkier than it should be — I don’t mean to sound ungrateful. I do know that they received regular updates from Dr. Bender. But I only know it second-hand (from Dr. Bender). It would have been nice if the people who were making the decisions about his health — about whether they were going to examine him for themselves — had kept us in the loop. Or even checked in with us once.

Anyway, the theory is as he grows, the kidney’s moving into a new resting place. With a little time, and a possible medication tweak, the edema should resolve itself in a bit.

Meanwhile, his blood work continues to be good. Dr. Bender has massaged some of the nutritional supplements, but everything else has been pretty constant for quite some time. Machen has started to take less of the steroids he’s been on. Thankfully, most of the side effects associated with steroids have not been seen — we’re all grateful for that. Best of all, Machen hit a record low for creatinine, which has been the major indicator we’ve been tracking of his kidney function. The last time we were at Dr. Bender’s and she showed that he’d hit a level that we’d only known was technically possible? It was awesome.

Back in October, I said the biopsy was pushed back a little. It had been scheduled again, and then two days beforehand, Dr. Bender scratched it again. Just to be sure about the edema. Now that the dust has settled on that issue, we were able to go forward with it Wednesday.

The procedure was interesting from the cheap seats (seriously, his mother and I got to watch) and fast — if you don’t count the the 40+ minutes it took to get the IV in. Less than 20 minutes from the time they got serious about set up and everyone was working to everything cleaned up and everyone out of the room. The IV thing is probably because he had a blood test the night before and had almost nothing to drink so he could have the biopsy (a real “The Gift of the Magi” moment).

Anyway, there we were sitting along the wall of the PICU room with 5 medical professionals (PICU nurse, Anesthesiologist, Respiratory Technician, Ultrasound Technician and Nephrologist) around Machen, and periodically we’d hear this sharp snap (like a mousetrap) and Dr. Bender would put the sample on the table. We thought about taking pictures of the process and samples (seriously, how often are we going to get a chance to see actual bits of kidney?), but it seemed gauche (and we were afraid of getting kicked out). Afterwards, Machen took a nap, got lunch and we left.

Really, after all the build up, it was nigh-anticlimactic.

We got the results Friday — no scarring, no damage, no signs of any problems. The technician who did the testing reported to Dr. Bender that Machen’s kidney was probably healthier than his own. Which is pretty much exactly what we want to hear.

We’ve got another appointment with Dr. Bender this week — regularly scheduled, and probably entirely uneventful. But I’ll try to post something either way. It’ll be shorter than this one, for sure. Sorry about the length, by the way. Oh, and Machen doesn’t have Celiac Disease, incidentally. A long story I’ll spare you from. Still, good to know.


Saturday 7/21 Update

I’d originally put this up for my friends/family on Facebook, thinking it’d be a line or two…I got carried away, I guess, so figured it belonged here, too. Sorry if this is a rerun for you.

Not much to say about Machen today. Between being out of the ICU and it being a weekend, we’ve seen few doctors (and only once, each), had few tests, and no OT/PT. So there’s little to say. Big changes, however, the giant IV tree is almost gone and almost every medication is now in pill form (and fluids/nutrients have to be taken the old fashioned way, i.e., eating and drinking). Changes have taken their toll, and really, this seems to have been the most physically challenging day for him. Still, onward and upward.

As a pastor friend recently said:

Certainly not the day I expected, not the day I hoped for, but certainly the day my heavenly Father ordained, and that is the important part.

A Couple of Bumps in the Road

For those keeping score at home: last week Machen got his regular blood work done. His kidney efficiency is down to 16%. Which sounds bad, but — we’ve been bouncing back and forth between 17-18 for the last few months, so this isn’t a big change. Also, it’s entirely possible that this is due to the lifestyle changes and irregular taking of medicine that comes from a lazy teenaged boy enjoying summer vacation (a couple of minor changes to some of other things in his blood suggest the same). No one at the nephrologist’s office is at all worried about this. Still, it’s a drop.

Here’s the big one: on Monday we got a call from the Kidney Donor Coordinator. They’d found a preliminary match for my sister and Machen — they couldn’t say how many donors/recipients were involved in the deal, but there were at least one other of each. Were we interested?

This is a question I just don’t understand — why would someone say no? Clearly, some do — which is why they ask. Maybe one day I’ll understand why someone would turn one down, but today isn’t that day.

Anyway, we were repeatedly told to be excited — just not overly excited yet. There were many things that could derail things (there always are, just more in a paired exchange). By the end of the week, there’d be exchanges of medical records, to be followed by fresh blood work. Then they’d start working out the logistics in getting kidneys to the right places in the right times on a schedule that works for everyone, etc., etc. But we could be looking at surgery in 8-12 weeks.

We — Machen, my sister, and the rest of the family — did get excited. I’m not going to acknowledge to how much of Machen’s excitement revolved around the disruption that 8-12 weeks meant for school. We also did what we could to not get overly excited.

About 48 hours later, when we were still trying to figure out how to talk about his development on the blog, we got the news that one of the pairs in the exchange had changed their “yes” to a “no.” We don’t know why, and probably will never learn. The important word was “no.” To say that this took a lot of the enjoyment out of the holiday for us is an understatement at best.

As discouraging as these things are — we’re trying to remember what we’re essentially where we were one week ago, when we were all perfectly content and able to muster up the required patience. We’ll get back there again. Just probably not today or tomorrow.