Our Teddy Bear's Journey

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

Organ Donation is a GOOD thing

I can’t find it now, but right after the Sarah Murnaghan controversy, some columnist somewhere wrote an article about how she didn’t see a happy ending there, and she refused to celebrate someone’s death.

Many parents of kids who need organ transplants face a similar internal discussion – in order for my kid to live, someone else has to die. How can I be happy for my kid when another family is facing death?

Here’s the thing, though.

They’re NOT killing people to harvest their organs, ok? Those people were going to die anyway.

There’s a HUGE difference between “someone died so my kid could live” and “someone died, and then as a result my kid could benefit.” The donor is not laying down their life in any purposeful way – in most cases, they’re just dying. They died. They would have died whether they were an organ donor or not.

And then, after they died, your kid derived a benefit from that death.

This is a good thing!

And it’s often such a point of joy – JOY – for the donor’s family. Their loved one is able to give an incredible, precious gift as their last act on this Earth. Their loved one, in a way, is continuing to live on.

After my mom died, we found out that she could donate her corneas. None of her other organs were worth anything (she had diabetes, kidney failure, heart failure, and after a lifetime of high blood sugars, I don’t think ANY of her organs would have made any kind of gift), but her corneas could still be used. Oh, how I wish she had known that before she died. She would have been so, so happy. As it was, that phone call from the Lions was definitely the high point of that whole week. Knowing that her corneas could give someone else the gift of sight – amazing. That she, who worried so much that her diabetes would take her vision before we grew up, could give someone else such an amazing gift. It brings me to tears every time I think about it. I’m crying as I write this, in fact.

I know her death wasn’t sudden or traumatic. We knew it was coming. She was lucky to live as long as she had. So, no, I haven’t been there in the shoes of someone making sudden decisions after their loved one has a motorcycle accident or commits suicide. I cannot imagine what that must be like. But I am still a donor family. I do know what that’s like. And it’s AMAZING.

Deceased donor transplants are emotionally charged, that is certain. Most recipient families are VERY aware that, while they’re rushing to the hospital for what will hopefully be the start of a new life, another family is at the hospital, starting THEIR new life, without their loved one. While they’re recovering in the hospital, they’re keenly aware of the funeral that’s being planned. Nobody celebrates the death, certainly not.

Someone died. Whether or not someone benefits from that death doesn’t change the fact of the death. They died. There’s no reason to feel guilty if you or your child benefits from a death that would have happened whether or not their organs could be used. And there’s no reason to pretend that, in celebrating that a life was able to be saved (or several lives, in most cases), that we’re celebrating that someone died.

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Dear Medical Personnel. Notes from a Mom.

1. This is my big one. If a child has a G-Tube, perhaps ASK if they eat orally. Let’s face it, this is a more productive question than half the stuff you ask. “Does he eat or drink orally?” is a GREAT introductory question to the infamous “Is he still eating and drinking ok?” Because NOTHING Pisses off a mom of a child who doesn’t eat orally like asking how he’s eating. He’s NOT EATING. Because he doesn’t eat. And maybe when you ask if he’s eating and drinking OK, you mean to include tube feedings, but I can’t assume that, because I can’t assume you’ve looked at his chart and know that he is tube-only. If I just answer, “yes,” I know that I’ll inevitably have a whole horde of confused residents, med students, and God only knows who else, because it’ll inevitably get written somewhere that he’s eating just fine. And THAT will be the one note that anyone bothers to read in his chart.

2. If his chart is too voluminous to read through before you come talk to us, perhaps you need to come up with a better system than making the parents answer the same questions over and over and over and over and over and over. After telling 30 people that he doesn’t eat orally, I’m kind of over that conversation. After explaining to 30 people that he vomits a few times a day and it’s OK, I’m likewise pretty much finished. I’m similarly tired of explaining to 10 people every day how his poops have been for the last day or so, or discussing how he tolerates his feeds, or how he got that bump on his face, or that he fell down and busted his lip. Maybe one person can come in and ask questions and I can record the answers into a digital recorder that we can post inside the door to our room. Anyone who enters can just listen. Maybe the first person to ask us questions each day just jots the answers down in a special place on his chart, a place where EVERYONE looks before talking to us.

3. If there are more than one of you going around and seeing patients, travel together. Honestly. There’s no excuse for a resident and a med student to come see him within 10 minutes of each other.

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Dear Medical Personnel. What you need to know about toddlers.

1. Toddlers have a drive to explore. They don’t just WANT to explore, they MUST explore. When they’re in the hospital, they are GOING to explore their rooms. I know certain room features cannot be changed, as they’re for safety. The Wall O Medical Stuff – the O2 plug, the suction machine, the emergency supplies – clearly all that has to stay. But they’re remarkably child-proof already. And keeping him out of the bin of emergency supplies is as simple as pulling the crib far enough away from the wall that they’re out of reach. But the rest of the room? Yikes!!

Assume a toddler will be into anything they can reach. If you put the computer on the floor, a toddler will push the fun glowing button. If you leave the scanner wand (for wristbands and meds) where they can reach it, they WILL reach it. If you have garbage cans that are short enough for them to reach in, they WILL reach in. If you have a table with a platform underneath, they WILL climb on the platform. Just assume this stuff and go from there.

And, no, you cannot expect a parent to prevent all of these things. I’m sorry. It sucks enough for him that he doesn’t get to crawl all over the unit (or the hospital), sticking his fingers in things and pulling on things and crawling into things and pushing things. He DOES get to play in his room, where he is stuck most of the day. I am NOT going to follow him around telling him No all day. You cannot expect that of anyone.

2. I understand that this is a teaching hospital and there are medical providers learning how to be medical providers here. I get that. But there’s a LIMIT on how many inexperienced people get to touch my kid. After three different people listening to his heart and belly and touching him and confining him over the course of an hour, he’s largely done. As am I. I’m not trying to stand in the way of learning. But maybe pace yourselves? Yikes. How would YOU like to have three strangers poking at you in under an hour when you’re trying to do something? You’d be annoyed!! So is he!

3. He’s a TODDLER. He’s not capable of being rude OR polite. He’s just capable of being him. Yeah, he might not want to say Bye Bye when you leave. He might want to say, “yeah, get out of here,” but he lacks the language skills, so he just gives you the stare-down until you leave. It’s just as likely that, since he’s a toddler, he’s still VERY literal and lacks the ability to conceptualize, so when you’re standing there NOT leaving, he doesn’t have any reason to consider that he needs to say bye bye. When he sees you actually GO, that is when he knows he needs to say bye bye. Because you’re leaving. Quit demanding that he tell you bye bye. Just leave.

4. Toddlers don’t have the verbal skills to tell you with words, “we’re done here.” That doesn’t mean they’re not telling you. Start paying attention. When Teddy takes the stethoscope off his chest or belly and hands it back to and then turns his back on you, he’s telling you to get lost. We’re done here. You might not be done, but he is. Respect that to the extent you can.

5. Get better at your jobs. Move faster. Think you can’t get a good listen at his lungs in 10 seconds? Well, is it any easier when he’s thrashing and screaming because you’re holding him down? No? Move faster. (And consider the above points here, too. If you’re the third person to listen to his lungs that afternoon, chances are that there’s nothing to hear there. How important is it, REALLY, that you get a good listen?)

6. Picture this. You’re at home, you’re working on something. A project. Your hobby. You’re busy. You’re focused. Someone you do not know comes in and tells you to stop, picks you up, plops you somewhere you hate to be, and starts jabbing at your belly and looking down your pants. Are you having a good time? No? This is exactly what you do to toddlers at every exam. An alternative? Bend those creaky old knees (oh, come on, most of you are like 14) and get down on their level. Let them keep playing. Join them in their play for a bit before poking at them.

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Pictures

2nd September Admission
Mama’s shoes. Note: He’s nowhere near a good enough walker for this to be anywhere nearing a good idea.

2nd September Admission
I didn’t have any stitch markers with me – I switched knitting projects that I was going to bring with me at the very last minute, and the bag I grabbed wasn’t fully stocked. Ugh. But this loop from a strip of gauze worked ok.

2nd September Admission
Sleepy Bear.

2nd September Admission
A friend brought me a delivery from home that included my blender!!

2nd September Admission
We, uh, had a rather large breastmilk mishap.

2nd September Admission
Going for a walk. The shopping cart actually makes him fall down more.

2nd September Admission
Playing

2nd September admission
600 mL of breastmilk, every night.

2nd September admission
We went to the preschool activity of foam painting. Instead, we played with All The Cars.

2nd September admission
He was VERY MAD that he could not GET IN the Barbie car and ride it. He kept trying to jam his foot in through the door. Those things are so funny, because you know there’s no convincing a toddler who has not developed a sense of conservation that he cannot fit in a car that’s less than half as big as he is.

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God Will Never Give You More Than You Can Handle

(thought I posted this a long time ago. Found this in Drafts, but am nearly certain I already published something similar. sorry if it’s a repeat.)

Who said this? NOBODY in the Bible, that’s for certain. God didn’t say it. Jesus didn’t.

Who does say this? Lots of people. People who are either trying to derive some sort of comfort from it, or people who are trying to be comforting.

But let’s call it what it is. It’s bullshit.

It’s also NOT COMFORTING. What’s the takeaway message there? That you should be able to handle this because God wouldn’t have given it to you if you couldn’t. That’s, um, not very comforting.

And where does God say this? Where does God say that He think YOU can handle things – anything – on your own? It doesn’t say that anywhere!!

Because, you know what? You can’t! You can’t. Say that right now with me – I cannot handle this. You can’t. I can’t. I cannot handle Teddy’s kidney failure on my own. You cannot handle whatever you’re struggling with on your own. You can’t. Doesn’t it feel good to say that all out loud like that? To give yourself permission to admit that you cannot handle it?

OF COURSE God gives you more than you can handle!

But.

He never gives you more than HE can handle.

Because it’s not about YOU. It’s about HIM. There’s nothing too big for God to handle.

The kicker here, of course, for the Christian (which is clearly who this post is aimed at) is to LET God handle it. I know I personally excel at giving things to God, for like 10 minutes, and then I say, “hey, God, you know what? I’ll just take that back. Thanks.”

Think about Jesus. Jesus even struggled with this the night before he was crucified – his soul was sorrowful to the point of death. And that was Jesus!! You are not Jesus. I am not Jesus.

For all of you reading this who have ever uttered that phrase, “God never gives you more than you can handle” in an attempt to be comforting, how about if you just never say it again? Instead, share the message with those you love that God DOES give people more than they can handle. But he never gives them more than HE can handle.

 

A few months ago, a friend passed along this excellent post on the same subject.

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Fall Risk

2nd September Admission
So, Teddy fell last night. Just fell. He didn’t fall OFF of anything. He just fell. Like new walkers do. But he landed funny, or he had his lip in his teeth or something, I’m not sure. And he busted his lip wide open.

2nd September Admission
So now, he’s a “fall risk.” Being a toddler is now some sort of medical condition, lol.

2nd September Admission

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Being In The Hospital With Teddy

Let’s get this factoid out of the way right off the bat. I do better with babies. Or preschoolers. Toddlers are fine, and it’s a fun age, and yadda yadda… but I need a break from toddlers. Just, you know, a small break, even. At home, if I can, in the evening, I let Teddy wander off to wherever daddy is and I take a LONG time getting his meds and night feed ready and sometimes just give up the pretense and sit down and watch some TV or read or knit without someone needing something from me. It’s nice.

At home, Teddy has two siblings to play with, entertain, and annoy him. He has a whole house to wander and play in. Toys like crazy.

Here… Well, here it’s just me and him. 24/7. Me. Teddy. This Small Room. This Small NOT TODDLERPROOF Room. I think he broke the computer in the room we were in last week, and he’s turned this one off at least three times, because no matter how many times I pull the chair in front of the computer to block it, it always gets moved back. Why do they have the computer at toddler level, anyway? Perhaps I’m supposed to keep him in the crib all day? Fat chance.

He hasn’t been sleeping great – his nap yesterday was 10 minutes – so I’m not even getting that as a break. And today, our nurse didn’t manage to remember to bring in the bag for the feeding pump that I had specifically asked for, so I’m up manually plunging in water every 10-15 minutes, which is hardly a relaxing break, either.

They do have volunteers who will stay with him so I can take a break, and it’s tempting, except I know that he’ll be terrified and miserable the whole time I’m gone. And he’ll be clingier for a few hours after.

Being on isolation this trip so far hasn’t been great, either. We can’t go to the playroom or to look at the fishies, or anywhere else on the unit. Ugh…

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Back in the hospital again

Teddy’s diarrhea waxes and wanes, but I thought I had been staying on top of it with extra hydration. Then we woke up Tuesday morning to weigh him, and he was down to 9.8 kilos. I weighed him again with clothes on and holding the thermometer and we got up to 10.1. Bad. (His post transplant normal has been 10.4 – 10.8, with 10.6 being most common.)

So… we came back to Iowa City. For IV hydration and to try to get to the bottom of the poopiness. Not because the poopiness itself is necessarily a problem – we can give more oral hydration to stay on top of that – but because it’s making it a bear to keep good Prograf levels (Prograf is one of his immunosuppressant drugs).

Also, his bicarb is dangerously low, and evidently, we probably would have started noticing him panting (or having seizures) had it gotten much lower. Yikes.

Wednesday, he had a scope of his GI system, from both the top and the bottom, and they took some biopsies and cultures. Good times, that. The visual inspection of his GI system seemed good. The doctor doing it said she thought maybe there was some cracking in his esophagus which might mean celiac, but he has a gulten-free diet as it is. The biopsies will tell for sure, but she seemed doubtful that that was the cause. His colon might have some edema, but it was hard to tell.

There was some discussion about trying dietary changes, but the GI doctors didn’t really think that was warranted (yay).

Generally speaking, I think it’s the Cellcept (another of the immunosuppressants). It’s known for causing crazy diarrhea. However, the alternative is known for causing crazy low white cell counts. So there’s a strong preference to try to make the Cellcept work. To that end, we’re trying to move to giving it three times a day instead of two, with a smaller amount each time. We’ll see…

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Genna and Teddy

Genna really likes to play with Teddy. But she can’t quite get past the idea that he’s just like a giant doll that moves on its own. She kind of expects him to do exactly what she wants. 🙂

Playing

Playing
See how his hair is wet? She washed it.

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Playing Outside

We got home last night, and this afternoon, Teddy played outside! In the backyard! With the other kids! For the first time ever!
He’s always had this thing with grass. For a while, he also hated concrete, but he got over the concrete thing earlier this summer and LOVED scooting along the sidewalk. But he continued to be really really anti grass. Any time he spend outside, he either sat on the big swing with us, or he sat on a blanket and basically cried the whole time.
Today, suddenly, grass was ok.

outside
See? This was his first non-hysterical contact with grass.

outside


Genna was being silly


Teddy even went down the slide. Dozens of times. And he had absolutely zero hesitation about that. (he’s such a daredevil, though.)

I didn’t take pictures, but the swing was a no-go. Absolutely NOT.

outside
This is the pool ladder, laying on its side.

outsideoutside
outside

outside
He tried to climb up like Genna, but couldn’t do it. Sad baby.

outside
Wally did his Kung Fu practice outside.

outside

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