Our Teddy Bear's Journey

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

What happened yesterday

on October 18, 2013

Starting Tuesday, Teddy did not seem like himself. I couldn’t put my finger on it. He just didn’t seem right. He woke up from his nap vomiting (unusual) and then was grumpy and irritable all day. He also had some diarrhea. I chalked the vomiting up to increasing his calories, and the grumpiness to being tired.

Wednesday, more of the same. By Wednesday evening, I was very concerned about him. He was pooping, seemed distressed, and he was falling down. But he was giggling when he did it, so I figured it might have been a fun new toddler game.

Thursday morning in Iowa City for a regular clinic day, when we got out of the car and went to the playground, he couldn’t stay on his feet. It was like he was drunk, or he was walking in an earthquake. Or he was dizzy. Combined with the diarrhea (which wasn’t a whole lot!)… I was worried.

His labs came back with very low sodium and potassium. Slightly elevated BUN (so he was a bit dehydrated from the diarrhea/vomiting) but everything else looking good (including the all-important creatinine, which is an indication of kidney function).

So he was admitted for the low electrolytes, since he was symptomatic (the falling down) and since the potassium was low enough to cause concern with his heart.

Then I went to go get our stuff from the car (thank you random stranger who helped me navigate the elevators at the parking garage with the IV pole and our suitcase).

And as I was walking back down the hall, Teddy nephrologist (Dr. Z) was kind of frantically looking for me. He’s going to have to go to the PICU. And have dialysis.

um, what?

So, in looking for answers to the electrolyte problem, Dr. Z ran a whole series of other labs and urine tests. One of them was Osmolality, and I don’t really understand it, but it’s something that looks at the concentration of particles in the blood. You’d expect it to be higher with dehydration, but not as high as his was. So then you start looking at other causes. Hypernatremia? No, Teddy’s HYPOnatremic. Hyperglycemia? No. Stroke? Diabetes? No, no. Ethleyne Glycol poisioning?

So they ran a check on glycols in his blood. And one of them came back positive. Ethanol (or ethleyne or… something like that, honestly I haven’t had time and probably won’t make time to really read into all this). So that seemed to support the high osmolality. And is a SERIOUSLY big problem. Like PICU and dialysis bad. (Dialysis NOT because his kidney wasn’t working, it was. But because that’s how you get this out of your system.)

So enter The Whole World. Like 6 doctors? All in here. Teddy had fallen asleep on our walk to the car to get the stuff. In the Doctor Who carrier. And he was OUT. He usually can be counted on for a GOOD nap after clinic days. And he had his head thrown back and his mouth gaping open. And that *freaked everyone out.* As in, wake him up, please. Yes, as in, wake your kid up from his nap just to prove you can. OK, and he WAS really really asleep. So I took him out of the carrier, and he was PISSED.

Then Genna’s all freaking out (as in, acting out) because it’s been a long boring day and she wanted to keep the dolly that she was playing with in the clinic, but their Child Life and the floor’s Child Life are different, and the play room here didn’t have a dolly and she wanted the chair in the room to be in one particular place, but Wally didn’t understand that because she communicated this desire by crying instead of using words, so then she got more hysterical. It was an awesome hour or so there, but we got through it, and once things calmed down in the room, she calmed down, too. She actually went to the Play Room with Child Life by herself, which she’s NEVER wanted to do before. And she LOVED IT.

So we’re loading up to move to the PICU and then the second set of labs came back. (I would have asked, but I didn’t have to – Dr. Z ordered a new blood draw to repeat all the concerning labs before we leaped into dialysis.) And the second set of labs came back fine.

In the meantime, three or four people are grilling me on exactly what he’s eaten in the last several weeks, what he could have gotten into, what brand of coconut oil we use, what we feed the chickens, where we store antifreeze, what other things he eats. And I’m having to admit that he likes to chew on anything paper-like he finds, so I found him with a wet wipe packet in his mouth (sealed). And he’ll suck on the disposable diaper wipes we use when he’s got diarrhea (I don’t use cloth when he’s got diarrhea in case it’s C-Diff). And he likes to eat diaper rash cream. But in talking to the doctor, when she was asking about chicken feed, and I said I guess, if some had gotten spilled in the part of the yard he’s been in, and he was very fast, he could have eaten a piece or two while I was taking pictures of carriers a few weeks ago… and then she said it’d have to be a cup or two. OK, no. No. Just… no. He doesn’t eat. And while I could see him getting a few drops or a few bites of something down on accident… I don’t see him doing so quickly enough to escape my attention, and I don’t see him doing it without gagging and choking. He doesn’t lick stuff off of his fingers on purpose (I mean, he puts his fingers in his mouth, but he doesn’t dip them into things for the purpose of licking them), so if he got something on his fingers and then put his fingers in his mouth, he would be unlikely to do that over and over. So I was mystified. Honestly.

In the meantime, we had to run a third set of labs because… which do you believe?

Third set, also fine. Total pokes? 11. The transport nurse who did some of his labs said she wasn’t going to come poke him again, she was out of places to poke.

So. NO picu. NO dialysis. YAY.

It has been suggested that they got some of the alcohol they use to clean your skin before poking it into the needle, but it seems like that would cause more false positives than they regularly see with this. Another theory, that I think more likely, is overzealous hand sanitizing by lab employees.

So that’s what happened. I hopped on Facebook right away and got people praying for him (thank you thank you thank you), but I was pretty calm.

So… Teddy’s still here to figure out the sodium/potassium issue. We have a theory and a plan and if the plan works, we go home tomorrow with new meds.

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One response to “What happened yesterday

  1. Steve Parker says:

    so Glad it is looking better.

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