Wow. There’s just so much to say, I’m not sure how to start. I knew I should’ve started this days ago (if only I weren’t distracted by something, can’t remember what). I guess I’ll just re-cap a few things — expand on some things I’ve reported on social media, etc. I’m going to keep names out of this for the most part, because I’m not sure I can spell them all correctly.
So, 365 days after we came to OHSU for his initial screenings before being listed, Machen got a kidney. The day started with the Surgical Resident coming through and giving us a preview of what was to come. In the midst of that, he summarized Machen’s condition for him to see if he understood things right. Now, typically when someone asks me what’s wrong, I take a deep breath and give them a 2-3 paragraph answer (at times, longer). This guy? He says “Basically, you were born with two tiny kidneys that don’t work very well.” 13 words. This is why all my writing is done for free.
The Resident also told us that Dr. X would be doing the surgery, but if something happened to Dr. X (woke up with a fever or something), there were two other surgeons available and qualified, Dr. Y and Dr. Z. It’s a good thing he warned us of that, because X didn’t do the surgery (he’s been around since, so it wasn’t a fever…) — Y did it. So when people started talking about Dr. Y being the surgeon, we’d have really freaked out if not for the fore-warning. “What do you mean, Y? We were told X! Are we even in the right pre-op ward? We’re not here for a leg amputation? We need a new kidney — you’d better get this right! Where’s Dr. X?” As anyone who’s ever been around me when a fast-food clerk messes up my order, you can imagine I’d have been a real pain to the nurses if not for that heads-up (and I’d have to have my attorney post these things while I served my disturbing the peace sentence).
While I wasn’t disturbing the peace, the head of pediatric nephrology dropped by to say hi and look him over. Twice in the conversation she called the new kidney “a beautiful kidney.” I’ve never looked at a kidney and thought “wow, that’s a looker!” or “That’s the renal equivalent of Idris Elba/Scarlett Johansson.” But I guess if you look at these things for years, maybe you can start to find the differences. Anyway, we assume that the beautiful kidney is a good one.
Clearly, as this photo taken minutes before he was wheeled away shows, Machen was really stressed about the day’s events:
We get a call at about the mid-point of an expected 3-4 hour surgery from the nurse assuring us that everything was going well (this is standard, and we were expecting it). But then 30 minutes later, Dr. Y comes out to tell us that it’s all finished and everything went really well. Machen’s stable, will be in recovery soon. He’s happy, the nephrologist is happy. The Kidney was producing urine already (this is a very good sign, we know from our education and from reading other parents’ experiences). Dr. Y also called it a “beautiful kidney.” At this point, I’m really beginning to question the standards of beauty these doctors use. Also, shouldn’t we be above that surface-level appraisal? Worth isn’t determined by appearance, I’m told (by magazines with supermodels on the cover).
Anyway, after an hour or so, we meet him in the ICU, where he’s supposed to be for a few days before spending another few in a patient room. All told, we’re supposed to be in the hospital for about a week.
Here’s a picture of the IV station they had set up that evening (not long afterward, a few more bags were added). I tried to get a picture of it in the dark, because it looks pretty impressive with all the lights and everything, but it didn’t work out.
As Anton Strout said, we might have been better to put him in a bacta tank (which is also a much better line than mine about it resembling Darth Vadar’s bathroom).
As anyone who’s spent more than 6 minutes in a hospital knows, one of the things you’re asked at least 37 times an hour is where your pain is. Except for when he’s sitting up, or coughing, he’s pretty much always answered 2 (I’ve heard a couple of 1’s and a 3). If he’s sitting or coughing — 7 or 8. That’s from when he first woke after surgery until now. Which is pretty hard to believe. I know I’d be worse.
Thursday, the Surgical Resident (who we really like, I want to stress — even if he’s a better writer than I am) stopped by first thing and liked what he saw. He told us that the lab tests throughout the day will determine our plans going forward (which sounds obvious, I realize, but in context it worked). The ICU doctor came in after that, was positive about progress, and talked about getting him walking. Not long after that the nephrologist stopped in, is very positive (I’ve talked to her 5 or 6 times now total, if she’s anything other than very positive, I’m pretty sure I’ll be terrified), she tweaked IV levels and whatnot, said more about the beautiful kidney and left. The IVs are primarily pumping fluids to keep the kidney working hard, anti-rejection medication, pain management and lots and lots of immuno-suppressants. Speaking of which, you should probably wash your hands before reading the rest of this post — with anti-bacterial soap if possible. We can’t be too careful about germs now.
By noon or so, he stood — taking less time and effort to do so than anyone expected — took a short walk with the Physical Therapist and then sat in his wheelchair for an hour or so. After all that exertion, he fell into one of the deepest sleeps I’ve ever seen for a couple of hours. Later on, he got out of bed again (this time with a couple of Occupational Therapists), brushed his teeth and then skipped sitting down for awhile, and just laid down to nap.
Throughout it all — he kept a generally positive attitude, tried to make some jokes (that most people who don’t know him didn’t register as jokes), and soldiered on. I can easily see where he could be a whiny, complaining, petulant mess with everything that’s going on around and to him. He’s not that at all, which is fantastic. On the other hand, I’ve put in almost as much time on his iPhone as he has since the surgery, and I don’t know how to operate it. Clearly, the kid ain’t back to baseline, yet.
We start off today with an kidney ultrasound — I’m talking 7 am, before anything else has happened kind of start. The Surgical Resident and the Weekend Nephrologist (who really impresses us and gives us some great info later on) stop by during the ultrasound to ask questions, which is great, because we actually get to hear the answers.
Apparently, the kidney function is decreasing somewhat — we’re still talking about lab results better than any we saw in 2017-18, but they started getting worse yesterday afternoon/evening. The ultrasound checks out — it’s not the kidney, it’s not the blood flow to the kidney, etc. Essentially, it wasn’t the surgery or the pretty organ. So, the theory is that it’s a side effect of one of the anti-rejection medications (how’s that for fun?). This is an anti-rejection medication given for many transplanted organs, and we remember last year being semi-amused at the irony of one of the medications given to preserve the kidney could affect it’s functioning. We still appreciate the irony, but have ceased to find it amusing.
They took some steps to prove that — and so far, it sounds like he’s responding the way they want him to. They’re even going to give him another dose of the anti-rejection medication this evening (just a smaller dose). The ICU doctor came by while I wrote this paragraph, they’re planning on moving him out of ICU this afternoon — so I guess they’re really pleased with the results of this morning.
Sitting up is a much more complicated process now than it was for him a couple of days ago ago. Machen did it again this morning practically unassisted and then took a walk maybe twice as far before sitting for an hour. He’s also gotten to eat for the first time since before he left home. He’s had some yogurt and cantaloupe (he’s been cleared for anything, but that’s all he’s gone for).
There are fantastic doctors, tremendous nurses and overall great staff helping him. We really cannot be more pleased with them. We’ve been told that the kidney is a great match, but we’re hoping to get a better idea how it was a great match next week (they educated us about a lot of things when it came to matches, they’d better use that education).
Yeah, we hit some bumps today — but overall he’s doing well and progressing. Everyone knew bumps would come, because that’s how things work. It’s just a matter of finding out what bumps will be in the road and then figuring out how to deal with them. So far, it looks like the pros know what they’re doing. Let’s hope that it continues that way.
I’ll try to update more frequently and keep things briefer from here on out. Thanks for reading — if you actually got this far. The expressions of support and care and the prayers have been more help than any of you could know. Thank you.
Oh, and wash your hands again, would you? Germs everywhere.