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 uniformally 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.

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).

A Dream Drive for My Kid

Last Friday, I described the unexpected delay in our return home. In between the time when the nephrologist and radiologist had found something and the time when they decided how much of a thing it was that they found, I mentioned that I’d received a phone call, and said the timing “was absolutely the right time and a very pleasant distraction.” Then I promised to tell you the full story when it was complete — I’ve put that off for a few days, hoping to get some better photos than the ones I’ll be using. But those haven’t shown up yet, and I want to post this while it’s still fresh-ish.

Earlier in the week while waiting for something in the lobby area for the Ronald McDonald House, I’d seen an advertisement for something called, Dream Drives for Kids. It’s this non-profit that “provides sick and medically fragile children access to amazing exotic cars for an hour-long experience we hope they won’t soon forget. Our goal is to create joy by taking the focus off of doctors and disease … and putting it on Ferraris, Lamborghinis, Porsches, Mercedes, and more through a two-hour, fully interactive sports car experience!” I went back to the room, forgot about whatever it was I was supposed to be talking about and told Machen about this — naturally he was interested, so we called and left a voicemail which led to the aforementioned call.

Before I continue — isn’t that just the coolest idea? It’s also a nice justification for someone to indulge in car collecting — I say that without cynicism. Hey, if I had the means to collect cars, I’m not sure I’d be nice enough to do this. But really, when you have a medically fragile or sick kid, so much of their life can be wrapped up in their condition — giving them any kind of a break is a pretty great thing. This? Well, it’s just all kinds of great.

Now, they’re in the middle of a move — which sounds pretty complicated (I think moving books is difficult, books you can put in stacks). So Machen didn’t get the full experience — no tour, for example — he got plenty, though. After a brief discussion with them on the phone, Machen selected a Lamborghini to ride around in, a 2002 Lamborghini Murciélago to be specific.

Sure just saying “a ride in a Lamborghini” is pretty impressive, but when you can say “a 2002 Lamborghini Murciélago,” it’s much better. It’s in the details, no?

We make arrangements and meet up with them (I don’t see their names anywhere on their sites, so I’m not going to name them). They are about the friendliest people we met in Portland (which is saying something — 94% of the people we met in Portland were tremendously friendly), They took some photos of Machen and the car, talked to him about the car and one of the scandals associated with that particular model (apparently, many Lamborghini stories involve some sort of scandal), some of the features it has, etc. Then he started it up.

Sorry for the annoying beep at the beginning, I cut most of it out Note the contrast between the plane taking off nearby to the engine starting. Am told (wouldn’t know…) it’s about as loud inside. My wife’s video looked better, but the sound on mine is better — and I don’t move the camera around during this (sure, she blames the wasp that crawled into her sandal and stung the bottom of her foot, but whatever).

Naturally, after the starting of the car, came the driving of the car — I’m not sure what all they talked about on their drive — the car, obviously; Machen’s health, school and whatnot. We followed along with the family of the driver — in nothing fancy, but very comfortable, and watched the Lamborghini in action (by the way, it was still pretty loud even when there was a car in between us. Not loud in an annoying way, just a not-so-gentle reminder that an engine more powerful than yours is nearby).

I’m not a car guy at all — this is not news to anyone who’s spent more than 14 minutes talking to me (less than that if the topic is automobiles). But it is impossible to stand near this and not become one temporarily. It’s tantamount to standing next to the original The Starry Night and shrugging. It’s really a fantastic machine, and it’s no wonder that my son, the aspiring car guy — smiles like this while sitting inside.

It was a great experience all around — definitely the most enjoyable experience Machen had while in Portland (not saying that he’s not grateful for the kidney, not thankful for the care or anything like that — but on the whole, it wasn’t a fun time for him). But this? Dream Drives took his mind off of everything for a while and let him experience some joy.

Here’s a couple of other pictures — when we get the others (taken by someone who knows what to do with a camera, and not just a couple of parents with cell phones), we’ll share some of them. I think she got some good shots.

Hit the Road, Jack

Okay, we’ve been given the proverbial Green Light (not the one from The Great Gatsby, the other one) to go home.

We will have to keep an eye on the potential bruit and there’ll probably be an ultrasound in a month, and who knows what from there. I’m feeling more secure about that now and the likelihood that everything is fine than I was Friday after the details we were given.

Then he’ll have a kidney biopsy around the 3-month mark — it sounds like that’ll happen in Boise. And . . . well, we’re a little murky as to what happens after that, actually.

But first, a little drive across Oregon, greeting our dog (who is elderly, and I hope her heart survives the joy at seeing my wife — she’ll be happy to see Machen and I, too — but it won’t be a health risk) and our other kids (priorities). Then we have a few things to take care of — getting the Lab here used to our new protocols and testing, meeting with the local nephrologist and setting up a new schedule with her (no more of this every 6-8 weeks nonsense for awhile — we’re guessing, anyway), meeting with some people from the school to get him going there.

Here’s the best part — Machen in particular has to be looking forward to this. We will spend some time in separate rooms. Maybe even out of earshot of each other. Since July 17, with the exception of his surgery (pre-op and post-op, too) and a few hours last weekend when my mother, sister, niece and oldest son pinch hit for us, Machen has had one or both of his parents within a few feet of him 24/7. Generally, the same room/vehicle. Can you imagine spending a month and change like that when you were 14? Somehow, we haven’t gotten on each other’s nerves too much, which is fantastic, but I think all three of us wouldn’t mind a little time on our own.

Once we’ve enjoyed a change of scenery, gotten the ducks in a row for the next couple of months of recovery, etc. Then the three of us will work on rejoining our regularly scheduled lives, already in progress.

Thank you all for reading, for your support, for your talking to us via social media, emails and otherwise — about our time here and your lives (it’s nice not to think about transplant stuff all the time). We’re not done posting here or anything — I just wanted to be sure to say it while we change gears.

Some words of thanks…

Been thinking a lot today about everyone who has helped us get to this point — especially this last week, and figured I’d publicly thank a bunch of those people. I know I’ve left off too many. But I tried to get everyone. If anyone’s offended that I didn’t name you, I assure you, I’m more embarrassed by the oversight than you are offended.

Mega (and very sincere) Thank Yous to:

Doernbecher Children’s Hospital and OHSU, who have some amazing medical and support staff — and even the less-than-amazing ones are top-notch. We’re keeping a list so we can do something for them later. But just in case they’ve got someone checking teh InterWebs for mentions of their institutions — we love the people here.

My sister and the fellow church member (anonymous per request) who were ready to participate in a paired exchange on Machen’s behalf. We owe you so, so, so much just for doing what you’ve done so far in this process. We don’t have the words — or any other ability — to express our gratitude enough.

Machen’s siblings and grandparents back home for taking care of so much for us — not to mention their texts/calls/etc. helping us through the last few days (plus the 14 years and change of help getting us to this point).

The rest of our extended families — cousins, aunts, uncle, great-aunts, great-uncles, grandparents, late great-grandmothers — who have helped in all sorts of material, psychological, spiritual ways.

Machen’s school for their support and encouragement (and the work they’re going to have to do to accommodate Mr. No Immune System in the future).

Our brothers and sisters in Christ at Nampa URC — you’ve asked questions, offered assistance, helped with funds, encouraged us and (most importantly) prayed for us for years. Thank you. (Same for the brothers and sisters in other congregations and literally around the world who have done this — for example, I’ve been reminded recently of one brother in AZ who spent more than a few late nights/early mornings talking all this out with me 14 years ago, and got me through a couple of dark nights)

Our super-supportive bosses and coworkers for allowing and putting up with the disruption this has caused — sure, they’re technically legally obligated to do so, but we’re pretty sure they’d have done it anyway.

Everyone who has/is/will contributed to the GoFundMe. Seriously — you made this possible.

The nephrologists and pediatrician who’ve got us this far (and the pediatrician who will watch over things in the future) — I’ve already talked about you in previous posts, so I’ll keep this short. Wow. You set the bar pretty high for medical care when it comes to Machen. When people fail to meet our standards in the future — it’s your fault.

Kinai — just because.

First Post-Surgery Update

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.

Friday morning:

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.