Scenes from the 2nd Kidneyversary

So I’d mentioned that we were having a little party today, last year we did the same, but (for various and sundry reasons) it was low-key. This year, given that we’re pretty home-bound, we went a bit bigger. Here’s some assorted photos from the day.

Machen and his mom (those in the house who can eat sugar and and gluten) started the day with some Krispy Kreme delivery.

Then we broke out a stuffed kidney as a gift and a bunch of Jelly Belly’s (a vaguely kidney-shaped candy)

Then we had some friends and family “over” for a Zoom chat/Jackbox game time:

Then Machen, his mother and sister made and decorated some sugar cookies with a kidney-shaped cookie-cutter (and a mega-cookie shaped by hand, with the cookie cutter size next to it for context)

His grandparents sent his kidney a birthday card:

And here’s one last photo of him:

2nd Kidneyversary!

Wow! It’s been 3 years since his transplant screening, 2 years since the transplant, and 16 years, 4 months & 1 day since we were definitively told he needed a transplant (he was 2 weeks old then).* And we’re so happy to be where we are.

* I got on a roll what can I say?

For those who want a trip down memory lane, here’s my first post after the surgery. I enjoyed reading it this morning, it brought back a lot of good memories (and a couple that weren’t so hot, but are easier on this side of things).

I haven’t been able to talk him into a fresh picture today, so here’s a quick pic from the day, moments before he was wheeled back for the operation to get that “beautiful kidney” (I still love that the doc used that phrase, especially in her mild Persian accent). Of a all the photos I’ve ever taken, this is one of my favorites:

As far as we know, there’s nothing new on the medical front. We’ve got an ultrasound and blood work next week, a physical exam the week after (his first non-virtual appointment since January or so). If that changes, I’ll be talking about it here.

The last few months for Machen, like almost everyone else on Earth, haven’t been what anyone’s expected. Given that he’s working to keep his immune system compromised (so, you know, his body doesn’t attack the kidney)–a global viral pandemic was toward the bottom of his wish list. Outside of 1 haircut and four blood tests, he hasn’t been in a building that’s not our house since the beginning of March–and that won’t be changing much anytime soon (beyond the aforementioned appointments).

We talked about not getting a transplant to put him in a bubble in the past. But…the world was a different place then. Hopefully, we get to pop that bubble soon.

Anyway, we’re having a little party here today, and will be Zooming with family and friends, too. It’s like a second birthday of sorts. Hopefully I’ll have a picture or two from that to share.

I want to take another opportunity to thank everyone for their prayers, encouragement, support (emotional, mental and financial), and reading about his Backup Kidney, it’s helped us all a lot.

We’re not done with hospitals, apparently

No kidding, a year to the day after our last ER visit due to fever, we took Machen in for a fever in its third day (we’d consulted with the nephrologist’s office two days earlier and then his pediatrician’s office the day before).

We went to a different ER this time, because we were pretty frustrated by the lack of care the previous one showed to our concerns about his kidney (I ended up getting a little testy and spoke a bit too loudly to the doc, but that’s another story). This ER doc (and staff) focused on the terms “transplant” and “immuno-suppressed” right off and kept him away from other sick patients and one of the first things the doctor said was “I’m going to run this by your nephrologist before we do anything.”

What a relief.

After some quick checks, they decided to admit him for observation and a course of antibiotics. But first, his first nephrologist was in town for a weekend as the on-call nephrologist. So we got to see him for the first time in almost a year before they admitted him. Which was nice (and allayed a lot of concerns—not that we’d have had concerns with his nephrologist or her partner—just seeing a trusted nephrologist early on was nice).

He was mightily dehydrated—which made getting blood tests and an IV ever so fun. But once he had a handful of bags of fluid in him, he bounced back pretty quickly. The fever came and went a few times over the first 36 or so hours, but never got so serious that anyone was worried.

The team at St. Luke’s Children’s Hospital in Boise did a fantastic job. Between interns, students, residents and doctors we lost count of how many we saw/answered questions for/heard from—all of whom were focused on diagnosing and treating whatever was going on and making sure that Machen’s kidney stayed healthy and protected. The nursing staff was great, too—I shouldn’t neglect to mention them (although we saw less of them than we saw of nursing staff in previous hospital stays…that’s an observation, not a criticism).

In the end, despite trying their best between tests and asking roughly 1.4 million questions, they weren’t able to be sure what the infection was. The consensus seemed to be that it was probably viral, but they couldn’t rule out a bacterial infection. But the fever went away, his appetite and energy bounced back, his other symptoms decreased, and he was basically back to his status quo. To be safe, they sent him home on an 11-day course of antibiotics.

Roughly 48 hours after we showed up, we were sent home. I’d say he was at 80-87% of his normal health at that point, another day of rest and eating (something he’d really neglected to do Friday-Monday), he was good enough to resume normal activities.

Not the most enjoyable way to spend a couple of days (it was a three-day weekend for his mother and I, and a day off from work could be much more entertaining). But it was needed and uneventful enough that no one got too worried. A good reminder that even on this side of his transplant, life is probably never going to be normal when his health is concerned.

Wish Granted and Accomplished (Overdue!!)

(I’ve been trying to get the time to write this up for a while now, I feel bad it’s taken me so long to publically thank the individuals and groups involved. That’s a reflection on my poor time management, not our gratitude.)

So, we talked a little about the Make-a-Wish process for Machen, which was such a fun day for him.

But a couple of days later, Michael, one of the volunteers, texted with an idea—instead of buying a complete system, why not buy components (saving a few bucks in the process) and then have Machen build the system with some help from BSU Computer Science department? Not only does he get the system he wants, but he gets a great experience—and he hopefully learns a thing or two.

How do you say no to that? What a great idea. It’s been a long time since I’ve done that, but I used to love building/tinkering with computers (until my limited knowledge base was left in the dust by advances, and my willingness to experiment was crushed by my budget)—we were sure he’d have fun with it.

It took a little longer than we expected—which was utterly fine, I want to stress. Life happens for everyone (even for non-profit groups. Maybe especially for non-profit groups). But in July (I said this was overdue), Mildred (the other volunteer, I think I forgot to use names last time) and Austin (a Mission Delivery Coordinator) presented Machen with his parts. I’m not sure I’ve ever seen his eyes as big as they were when we drove up and saw the components.

I should also add, that the local Baskin-Robbins was cool enough to let them use their outdoor seating for the presentation and even through in some ice cream and B-R swag! Which was another unexpected bit of generosity?

Then Austin hooked us up with a graduate and instructor of Boise State’s Gaming, Interactive Media and Mobile Technology (GIMM) program who came out and helped Machen build it.^* The amount of time these two put in the first night was amazing—especially the graduate, Jake, who stayed until it was almost technically morning.

^* Locals will understand how much I appreciate them as this is likely the first time I’ve ever said anything positive about BSU in writing. As a member of an Idaho Vandal family, it’s hard to do.

And yes, I said the first. For a good dose of reality for Machen, it didn’t go all that smoothly. This is a computer, not a Lego set. There were a couple of minor hiccups (no big deal) and a few laughs along the way. But eventually, they hit a roadblock that couldn’t be fixed quickly. So, we arranged for Jake to come back later to finish. A couple of weeks later (our delay, something I’ll talk about soon), he sacrificed most of a Saturday afternoon to wrap things up.

In the end, Machen learned a lot and had a great time building this machine that inspires jealousy in his family members and friends.

That’s one of the most genuine smiles I’ve ever gotten from him with a camera.

So again, from the bottom of our hearts, the Newton family wants to thank Nampa’s Baskin-Robbins, Idaho Make-A-Wish, Michael, Mildred, Austin, Daniel, and Jake for their time, effort, generosity, graciousness and many other ineffable qualities.

And hey, if you have the means—support Idaho Make-A-Wish (or your local chapter). These incredible people can’t make sick kids’ lives a little richer without help.

1 Year(!) Kidney-versary

One year ago today, prayers were answered, and Machen got his slightly-used kidney. The changes since then are unbelievable, really.

I probably shared this then, but you never know, and it’s a favorite of mine—this is a picture I took shortly before the anesthetist got to work. He clearly had his priorities set—then again, he didn’t touch the phone again for a few days.

A week ago, he had his 1-year blood work and biopsy (he had an ultrasound the week before, come to think of it). This isn’t the best picture, but given the number of people (7!) that took part in the biopsy, this is the best I could do (his mother got one from another angle, but it didn’t come out so hot). I should note that most of those montiors, devices, and machines that go ‘ping!’ were left unused.

The results were uniformly positive—the kidney has maintained its size, is healthy, and shows no sign of rejection. He still has the bruit, but it’s usually quiet and shows no signs of impeding the work of the kidney. By the way, he’s down to only 4 medications (9.5 pills a day)! He’s growing, putting on weight, physically active, has a better ability to concentrate, managing his diet (but we could do better at that, but we’re still getting used to him with an appetite—14 years of conditioning is hard to overcome), and overall is healthy.

Healthy and normal. Which is basically the goal.

It’s all about maintenance now. Healthy habits, taking medication (he’s incredible at this part, truly), staying in touch with the doctor.

On the one hand, this is our everyday life and it’s very easy to take it for granted. On the other, whenever I stop and reflect on it—my mind is boggled.

We’re all so grateful for the support, the prayers, the encouragement that our friends, family, readers, and everyone else have given. The surgical and hospital team, his nephrologists and the pediatrician who kept him going for the first 14 years of life—did the heavy lifting, but it’s the rest of you who’ve made it possible for us to keep going. We can’t thank you all enough.

I do have a few other things to report on—but I want to wait until I can tell more than half a story, so I’ll hold off on them. But I wanted to get something up today to commemorate the anniversary and for one more chance to express our gratitude to you all and the Great God who is guiding all this.

Another Milestone

As you can tell, it’s been quiet lately (and not just because I can’t keep up with things here). But there’s one noteworthy thing that happened lately.

So last week (when I should’ve posted this — I know), Machen hit one of the big post-transplant milestones, 9 months. To commemorate this milestone, he had another ultrasound (things are stable — bruit is still present, but unchanged), and our regular monthly visit with his nephrologist.

His blood pressure is good (could maybe be better, but not much). All the blood tests are on target. He’s growing well (a couple of inches) — and putting on weight (around 50 pounds!). My wife saw a Facebook from three years ago the other day where she asked her friends, “Okay, how do you fatten a kid up who doesn’t like to eat and do it without adding protein or dairy?” Now she knows, “Apparently, the answer was to get him a new kidney! 😂”

The biggest change at this point — and the most easily noticeable is the sharp reduction in medication (which will lead to a little more in the next few weeks). He’s off his steroids and three others. Some others have been reduced, too. He’ll always be on some medication as long as he has this kidney.

Probably the best way to demonstrate this is visually. You may remember the photo I posted right after we got out of the hospital with a daily dose of meds:

That was then, this was last week:

That’s still a lot of pills, but he’s come a long way.

The one year milestone is another biggie (it’s huge, really). I’ll try to post something before then. Thanks for your continued interest and support!

A Wish Fulfilled

I haven’t talked about this yet for some reason, but last summer, I’m driving home from work and I get a call from a number that looked a lot like the number of the Transplant Nurses, so I answer it instantly. It’s, of course, not one of them (or the plotline of this blog would be very different). It’s one of the Social Workers from the hospital (I don’t think it was one of the two we met/worked with), asking if we were interesting in being contacted by Idaho’s Make-a-Wish foundation.

I stammered a bit. “Um, just what do you think is wrong with my son?” Which confused her a bit, “Isn’t Make-a-Wish for kids with a terminal condition?” She rushes to reassure me that no, they deal with kids who have all sorts of critical illnesses == like renal failure. Meanwhile, I’m sweating bullets — for a second there, I was a little concerned. We chuckle a bit about how she’d be the last one to tell us something new about his condition and chat about him in general. In the end, I say, sure, they can call.

I go home, tell me wife the new thing I learned about Make-a-Wish and we pretty much forget about it.

Skip to a few months, a form about interests, and one transplant later, and they reach out to us and we have a meeting — there’s two volunteers (Michael and Mildred) and us. Mildred pulls my wife and I aside to fill out some paperwork and whatnot. Michael chats with Machen about his interests and whatnot — oh, and gives him this gorgeous looking book about the history of the Ford Mustang.

I’m probably missing some stuff, but I really had little to do with the whole process, and I’m trying to keep this from being the usual long post. Those are the highlights — after the meeting we had with them, they went off to think about whatever it was that Machen told them (really, I have no idea) and then they called about a month and a half ago, telling us that Machen’s wish was going to be fulfilled today, but they didn’t want him to know about it until the moment.

So Saturday, we tell load up the van with the kids — telling them we’re on the way to do something, but first that Mom wants to stop by Best Buy. When we walk in, we’re met by Mildred, Michael and a Best Buy associate, David. It just now hits me that we didn’t get pictures of the volunteers with Machen. Rats. Anyway, here’s a picture of a pretty stunned (but happy) Machen with David.

And then one of all the family, too.

I really do feel bad about the volunteers not being pictured.

Anyway, Machen and David spent a little more than 90 minutes putting together a dream system that will be delivered at some point in the future.

I’m still not sure that he’s recovered from the day, nor has he really stopped smiling. The generosity of these volunteers and the organization is really something. We can’t thank them enough.

Oh, look — I did find a picture of Mildred, you can see her standing behind Machen there (Michael would have been to the right).

Sound and Fury, Signifying . . .

So part of the boilerplate warnings they give parents/patients before a biopsy is that bleeding can occur. Well, Dr. Bender catches herself at this point to say, of course bleeding will occur — a needle is being stuck into an organ. It’s just that bleeding might happen after the biopsy. Kidneys don’t always clot like they’re supposed to, apparently. But the odds of it being bad are small, and they know how to deal with things post-biopsy to reduce the risk — and even if it happens, they can take care of it.

It’s worse, actually, we’re assured after a biopsy of native kidneys. You should know, in case it happens to you. There’s a protocol for it like there is for a transplant, but given the location of a transplanted kidney, they’re easier to deal with.

But I digress.

After a couple of days of rest and care, the possibility of the wounds not healing properly is almost nil. Catch the almost. Now, Machen had no signs, really, of anything afoot. He was tired. Really tired, a lot in the two weeks after the biopsy — and we did talk to Dr. Bender about that, but no one thought much of it. He was also paler than usual, but not horribly.

Until his regular blood test results came back 2 weeks after the biopsy. And Dr. Bender calls right away, leaving me a voice mail saying that she’s ordered an ultrasound that afternoon and needs to talk to me about the blood test. That tends to get your attention, I’ve gotta say. His red blood count, hemoglobin levels and other things are low. Seriously low. Low enough to indicate internal bleeding.

His mom’s not available, so I’m able to get out of work for the day — so I grab him from school (I had to call the school right after I talked to the doctor to keep him from getting lunch and ruining the test). Oddly enough, but Machen tells me this is Standard, they spent the first half of the time (maybe longer) scanning his native kidneys. I guess I kind of understand that when they’re getting an ultrasound to check on kidney health — but when they’re looking for bleeding, maybe focus on the thing that was stuck with a needle?

Anyway, they made us stick around for a bit while they got an quick read of the results and then let us go home — which he and I took as a good sign. Doctor Bender called a couple of hours later to express a lot of shock — no bleeding. So we got to go back for more blood work. Three various tests within 23 hours — that’s almost post-hospital numbers.

It turns out that Machen picked up a viral infection, probably one that is preventing the production of Red Blood Cells. Which sounds bad, but is better than bleeding. This is what happens when you take a handful of immuno-suppressants a couple of times a day.

He’s still weak, still tired, and his blood tests don’t show that he’s bounced back in the two weeks since (we haven’t heard an official word about his most recent tests, but my uneducated eye isn’t impressed with what I’m seeing). I was hoping to have something more definitive to say about this virus and his recovery, but that’ll have to wait for a bit, apparently. We’ve got another clinic visit coming up Thursday, so hopefully by then we’ll have answers.

By and large though, the short version is this: the new kidney is doing great, the kidney’s host could be doing better.

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.

So much for that last update . . .

So the doctors have decided to postpone the biopsy for a bit — the kidney seems to be healthy enough that they can push back the date to confirm it. Mostly, until they get to the bottom of the edema thing, they’d rather not take any chances with Machen’s over all health and why do something that could cause bleeding when we’re not sure what’s going on with his blood.

Essentially, they’re taking a “don’t poke the bear” approach. Which, while frustrating, is understandable. Honestly, Machen’s mother and I would prefer a “find out what kind of bear it is and get rid of it” approach. But that’s not on the table for the moment.

Meanwhile, his edema is looking great. Not because they’ve figured anything out, or because of the med tweak (it was as effective as they expected). But because he came home with a cold Thursday, and has been pretty much laid up with it all weekend. Personally, I think there’s a pretty big diagnostic clue there, but I’m not Gregory House (I’m not even Lawrence Kutner, for that matter), so I’ll leave that to the professionals.

Given his weakened immune system, we’ve got to keep a close eye on simple things like colds, because they can turn into something else pretty quickly, as I was reminded a couple of times last week by his doctor’s nurse. Even before he came home sick. So, we were on pretty high alert Friday when he developed a fever — that thankfully went away. And then came back a day later, and didn’t go away as quickly.

Actually, it got worse. Which led to a phone call with the on-call nephrologist, which led to us hanging out in the ER for a couple of hours last night while they could run a basic blood test and do some tests for strep and influenza. Everything came back looking fine — but we can’t be too careful.

Mostly, we spent the time being bored. He just laid in the bed, and his mother and I killed time playing with filters on our cameras. He didn’t find this nearly as diverting as we did and kept insisting we owed him a modeling fee for every shot we kept (nothing outrageous, I think the grand total might have been $10).

All in all, a slow night. So far the cultures they took have come back as clean as the original tests — and the fever dropped right about the time we got into the ER last night. So . . . probably much ado about nothing, but you never know.

We’ve got a clinic visit tomorrow, so I might be backtracking all of this. Or not — I don’t know. As soon as there’s something to report, I will.