Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Hot Chocolate Face

So Genna has this nasty thing she does where she eats hot chocolate powder. So she was having some the other day… and she was sitting at the table, eating it with a spoon. (I only let her have a portion equal to what she’d get if she were drinking hot chocolate.) And Teddy REALLY wanted some. So I gave him a small dish. He LOVED it. LOVED IT.

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I suppose I should be happy that he was putting something that is at least sort of food into his mouth and swallowing it (or, more likely, just letting it dissolve)… but why can’t he want to eat something that’s actually food??

So far, he’s actually swallowed bits of bread (a long time ago), a goldfish cracker, a few crumbs of some vanilla wafers, a bit of yogurt (several times), a tiny amount of mashed potato, and the hot chocolate powder. Yogurt is the only thing he’s repeated eating, but he’s not reliable with eating it. Most of the time, he just shakes his head and says No.

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Kids at Appointments

So, remember when I had a whole thing about how I don’t bring my olders to Teddy’s appointments? Well, they’ve come for all but one of his appointments since his transplant. They have both STRONGLY wanted to come, and honestly, I just haven’t had the heart to make them stay with someone else for the day.

It’s been OK. With one exception, they’ve behaved really well. They’re polite and they’re not wild. They’re not really benefiting in any way from being there, and honestly – Genna seems more traumatized from the experience than anything else. She loves to try to help him feel better, but so often these days, it just doesn’t work, and it hurts her to see him so upset. And I’m not sure that a day with me, sitting in the car and playing on iPods at the hospital is really any better for them than a day sitting anywhere else…

Anyway, we make an effort to get to the hospital at least an hour before our report time, so we have time to get ourselves organized, go to the bathroom, and visit the playground. That helps a LOT, because they can get their car-ride wiggles out before having to go sit quietly in the clinic.

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Today’s Clinic Appointment

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I took this picture before the fog got bad. I couldn’t see the road signs. It was THICK.

But today’s clinic went good. He’s been very clammy, which can be a sign of dehydration, and it’s been hot here and we don’t have A/C. His BPs had been high for a few days right when the heat started, and his weight is down, so we were afraid about dehydration. Our doctor said she’d admit him if his labs were wonky at all. BUT! They were fine. We came home. There was much rejoicing.

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A journey for me

When I was pregnant with my oldest, 10 years ago, I started a journey that would change my life. Parenthood AND a journey into the world of “natural” living, green living, whatever you want to call it. Cloth diapers, Attachment Parenting, organic foods, natural fibers, whole foods, natural medicine, reducing exposure to plastics and chemicals, etc. It was an exciting journey.

And particularly in Des Moines at that time – the whole “natural living” movement was just really getting started and I was there for all of it. And I was really, really into it.

And then I had Teddy.

Well, to be fair, I had started getting a little disillusioned before Teddy. First, there’s no possible way to do everything that all of the “experts” recommend. You’d be doing nothing but sprouting, soaking, blending, juicing, growing, drying, distilling, and hand-milling amaranth seeds you grew yourself to make flour for bread you knead by hand using only ingredients grown within a 5 mile radius of your house. And, second, a lot of what the “experts” say isn’t really well-supported by evidence, and too, too many people in the community have a very tenuous grasp on the “why” behind much of what they espouse.

But I was still very comfortable in the NL “world,” and though some people seem to suffer under the burden of believing that they have to be all-or-nothing, I was (and remain) quite comfortable choosing what worked for me and not worrying about being conventional for the rest.

But Teddy has started me on a different branch in the road I started down with my first pregnancy. And it’s a branch that’s been painful to follow at times. A branch that, while leading me in a good direction for me and my family, is also leading me further and further away from the conventional natural living “stuff” with which I am comfortable and familiar.

It’s a path that’s made me feel cut off from most of the people I used to feel I had the most in common with, and left me sort of dangling out here in no-man’s land.

And it’s a path that’s made me shockingly aware of how judge-y many of us in the “natural living” community end up sounding or being. And I hope that this new awareness is helping me to more respectfully honor the choices families make – either because they want to, or they have to.

Hopefully, in the not too distant future, I’ll wind up in a place that feels more comfortable to me than the place I am now.  But in the meantime, much like the Pioneers who settled the West, we’re learning as we go what things we can take with us on our new journey and what things are best left by the side of the road.

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Having fun

Teddy helping Wally Exercise

Wally laid down a few days ago to do some sit-ups and Teddy thought it was the perfect chance to snuggle. (that’s hot chocolate leftovers on his legs. he wanted my hot chocolate cup that had a bit left in the bottom and I wasn’t about to say no.)

Teddy helping Wally Exercise

Then he realized that Wally was really sort of like a big ride.

 

Teddy helping Wally Exercise

The next day, Teddy is enjoying some naked time – his second time being naked since his transplant, and the first naked time that didn’t involve rubbing poop into his incision – and found Wally doing push-ups. “what is this?” he said. “It must be some sort of fun ride!!”  When Wally slacked off on the pushups, Teddy jumped up and down on him.

Teddy helping Wally Exercise

Whoo hoo! This is fun!!   (sorry about the extreme closeup of Genna’s dress on the left and the camera strap on the right.)

 

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Dining Out

This week’s update from BabyCenter (yeah, I still get the BabyCenter emails) was “Don’t let your toddler’s unpredictable behavior keep you from enjoying an occasional meal out.”

This reminded me of a blog post I’ve wanted to write for a while. Dining out. With a tubie. Who doesn’t eat orally.

Even when we could go out to eat (we can’t right now), I hated dining out with Teddy, and we rarely did.

Because he doesn’t eat.

Think about dining out with your toddler. You keep them busy with toys until the food comes, then you have something new and fun – the food. They eat for a while, maybe play with the food for a bit, and in between helping them eat, you are somehow also able to eat your meal. After the food, they can usually be entertained with toys again.

Now, take away the food portion, and picture trying to keep your toddler busy at a table with a high chair and a few toys, all of which must disappear if they hit the floor.

Yeah. Gets old quick.  It’s really the one time that I strongly wish Teddy ate orally. Most of the rest of the time, I’m ok with the no-oral thing. I mean, we’re working on it. I’m sure he’ll start eating orally at some point. And if he doesn’t start on his own, we’ll cross that bridge when we come to it. It’s not a priority. But sometimes, it would be nice to eat out and not have it be so stressful with him.

(Though at this point, it doesn’t matter because, like I said, we’re not dining out for germ reasons.)

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PTLD (or, last week’s Scary Talk)

PTLD scares me the most out of all of the potential post-transplant complications. That and all the other types of cancer he could get (for example, he’s at a much higher risk of skin cancer).

PTLD is Post Transplant Lymphoproliferative Disorder. It’s a type of cancer specific to transplant patients, frequently associated with Epstein-Barr Virus infection. Pediatric patients are at a much higher risk than adult patients (partly or possibly primarily because many peds transplant patients have not been exposed to Epstein-Barr Virus at the time of their transplant, but receive a kidney from an EBV-positive donor, or are exposed to EBV some time in their lives while immunosuppressed).

Then, evidently, because of his hypogammaglobulinemia (basically, parts of his immune system have been pretty low ever since we started looking at them) and possible functional antibody deficiency, he’s actually at an even higher risk for developing PTLD. Yay, him! 🙂

Mostly, we just monitor him closely for symptoms of EBV, and I’m supposed to get very familiar with all of his lymph nodes, and we’ll watch his tonsils closely, and a few other things, and if he gets it, the treatment is to reduce immunosuppression and hope it goes away. 🙂  I need to note – chances of him developing PTLD are still fairly low, in the grand scheme of things. I can’t quantify it – frankly, every study I’ve read has been unable to quantify it even in the general transplant population, let alone factoring in his immune issues.

But it freaks me the H out.

And it’s one of those transplant things that most people just aren’t aware of. Getting a transplant is a GREAT thing, and there are obviously more benefits than drawbacks (I mean, being alive and having a greater than average risk for cancers still beats not being alive, right?), but there are still a lot of scary stuff that come along with it.

 

If you want to read more about PTLD: here, here, and here.

More about hyopgammaglobulinemia: here, here, and here.

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Completely awesome people I know

We’ve been so blessed to have the support of so many people here locally, I wanted to take a minute and thank everyone for the physical support we’ve received.

While I was still in the hospital with Teddy, different people brought a meal over to Randy and the kids every night they were here without me. Randy can cook (he’s an excellent cook, actually), but not HAVING to cook meant his evenings were much less stressed, which helped the kids out a lot, too.

Then after we got home, it was a good week and a halfish before I had to cook again, which was so wonderful.

A neighbor has been mowing for us while we were gone, and she wants to keep mowing as long as the grass needs it this year, even though we’ve told her Randy can totally do it now.

Andrea and Steph brought me snacks, food, and Onesies for Teddy while I was in the hospital, and Abby sent yummy baked goods. One of Steph’s friends also brought me dinner. 🙂

My mother in law, father in law, and sister in law have helped with the big kids, even taking Wally to the doctor when he got a sinus infection.

I know people were taking good care of Tiff with meals, too, which makes me super happy.

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Happy One Month Kidneyversary!

Hard to believe it’s been one whole month with his new rock star kidney!!

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This Week’s Clinic Visit

So we went from Outpatient Surgery to the Peds Speciality Clinic. We were able to draw labs from his IV, which was awesome. He still, you know, freaked out because she was holding his foot, but it was so much better than having to get poked.

I wish I could really adequately describe his anxiety and dislike of people touching him or restraining him in any fashion.

Then the transplant surgeons met us for our weekly Incision Torture Session. This week, they snipped off the granulation tissue that was growing out of some of the wider sections of his incision, which I think was quite painful for him. And it bled a lot. But it does look a LOT better. They talked about how it is not going to be a very pretty scar at this point. Whatever. I snorted and said, well, take a gander at the rest of his torso, it’ll fit right in. (Though surgeons have always said that his other scars look really nice, I personally think a scar is a scar. Then they asked what a few of them were from and I have actually FORGOTTEN some of them. Then I said I have pictures that I’ve labeled so I can keep track and then they looked at me with that look I’m getting somewhat accustomed to – that “wow, you’re an odd one” look. But whatever.)

The incision is not as green any more, which is great. I can go back to once daily dressing changes (I was at three times a day for a while, and his skin was getting REALLY raw).

His labs looked ok. His phosphorous is out of the danger zone (it had been dangerously low), his sodium is looking ok (a little low), his hemoglobin is normalizing (still quite low, but, again, not dangerously so), but his creatining (which is a marker of kidney function) is creeping up.

ugh.

It’s .5 (which is funny to me to be on this side of transplant and see .5 as HIGH, because it’s been as high as 4.something, and normally hung out in the 3’s).  0.3 is normal, and evidently 0.5 is about as high as they’ll tolerate without investigating.

Immunosuppression drugs are funny things. They’re nephrotoxic, which means that they actually cause harm to the kidney, while they’re protecting it. If the drug level gets too high, it can cause the creatinine to go up. (Rejection can also cause the creatinine to go up.) We’ve been having trouble maintaining adequate Prograf (one of the immunosuppression drugs) levels in Teddy, and have increased his dose significantly, so we were kind of hoping that maybe we overshot his Prograf level (meaning, we increased his dose too much, and his Prograf level would have been way too high), but it came back at 9.8. His target is 10.

So… I’m trying not to worry about it while we wait for labs on Monday.

He’s been pretty hypertensive, so we increased his blood pressure meds. He’s been pooping up a storm, and his phos was OK, so we decreased his phos dose (which can cause diarrhea), and hopefully that helps. I’m still suspicious of the Cellcept (another immunosuppressant), but we’ll see.

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I’ll admit, I’m ready for that kidney to really kick into gear. They said it could take a few months, and I’m trying to wait patiently.

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Thursday was also Scary Talk Day, but I’m not in the mood to dwell on that, so I’ll save it for another day.

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