Our Teddy Bear's Journey

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

Yikes, Teddy!!

on October 28, 2013

So, yesterday we learned Teddy has a fun new issue. I came home from a birthday party and Randy told me that Teddy stopped breathing a few times while crying. It sounded exactly like what the kids of one of my friends do – it’s a genetic thing that their brain just kind of stops working right when they cry and they stop breathing. Once they pass out, they start breathing again.
Then yesterday evening, he tripped over a toy and fell on his butt. It made him upset and he started to cry and get up to come to me. You know how kids, when they really start crying, have that first cry, and then there’s that big gasp before they go on? And maybe I’m alone in this, but I have always joked “ok, breathe, now!” Well, Teddy just didn’t. He was trying to walk to me and his eyes rolled up in his head and he literally just face-planted mid-stride. I ran over picked him up (he was dead weight, no movement, no breathing) and shook the ever-loving snot out of him until he started to move again. His eyes fluttered a bit, he looked at me, took a deep breath, then stopped breathing again and turned all limp again. Commence frantic shaking again, consider starting CPR, start yelling at Wally to go call 911, and he popped back up. And then vomited. Sigh.

So I hemmed and hawed around for a while but eventually called the nephrologist on call and asked for advice, and they wanted us to go to the ER and have him checked out. They did labs and an EKG, but everything was ok, and so he just has what’s called “breath holding spells.” (same thing as my friend’s kid, and evidently quite a few kids.) We can expect this to happen any time he gets really upset until he’s 4 or 8. Good times. The ER called it “breath holding” and implied he was doing it on purpose, but that’s not really in keeping with what the “experts” say.

The crappy thing is that, other than shortening my life by a few decades, losing consciousness is a big red flag for a lot of things we have to watch out for with him – including low sodium. Yuck.

Anyway, we had a long night in the ER, but we survived and we did not take an ambulance ride, so that was good.

I continue to be impressed with the ER doctors at Mercy in the children’s area. The doctor last night was very similar to the doctor the last time we used the ER – totally comfortable with calling UI for guidance, not territorial or arrogant about it. (Also, “he’s a recent kidney transplant recipient” is like the Golden Ticket in the ER. Whoosh – into a room.)

The nurses, however, continue to be a weak point.

Teddy’s labs. He needed labs. So first, they say they’ll do it with a finger poke since it was just a CBC. I said, no, there’s also a metabolic panel and a tacro. “Well we could do that with a finger poke.” “No,” I said, “you can’t, because it’ll make the potassium artificially high and freak everyone out, plus I think you’ll have a really hard time getting everything you need with a finger poke.” “Yeah, you’re right, it is a lot of blood.”
OK. SO their ER nurses can evidently ONLY draw labs on a child who is laying down with the parent laying next to them. I had to lay on my side and trap his feet between my legs and then also control his free arm. This was a huge red flag. If you are so inexperienced that you can only take labs with the kid in one specific position, then you probably have no business drawing labs on my kid. The nurses in the clinic and on the peds unit at UI almost universally don’t even attempt labs on him any more. He’s just *that* difficult. But, ok.
So we try it.
Except they had me remove his shirt. And they kept telling me to lay him down. But THEY weren’t ready yet. Man, I’ll lay him down for you, but you get your crap in order first. When you’re ready, then I’ll get HIM ready. He’s 22 months. He doesn’t lay still and wait for you.
So back to the shirt. I had to take off his shirt for them and the room was really cold. I’d just talked to them about his small, deep veins that roll around when you try to poke at them. And I’d just refused EMLA – to much eye rolling – because it’s a vaso-constrictor and will only make it harder. Then they had me take off his shirt in a cold room doing what? That’s right – driving his small veins deeper into his arms because he was cold and that’s how your circulatory system works. Am I the only one familiar with basic physiology here?
So, Nurse #1 ruined his “good” vein in his arm. Nurse #2 tried his left wrist. Then they called Transport. Then instead of transport, another nurse came in. Attempt #3, she ruined his other arm. Attempt #4, she got some blood out of his wrist, then SHE ACCIDENTALLY PULLED THE NEEDLE OUT WITH HER ELBOW. Yep. She got tangled up in the tubing. But they had gotten just barely enough for the metabolic panel and the CBC, though it was hemolyzed so we didn’t get a good potassium. (And the ER doctor was so cute explaining to me what “hemolyzed” meant.)

And I think I annoyed them with my “not intimidated by a hospital” “making myself at home here” ways. I didn’t keep him in his room the whole time. We went for walks in the short hallway. We went for wheelchair rides in the short hallway. We paced the short hallway in the wrap. We explored the cupboards and drawers (ok, yeah, I was semi looking for supplies I could use).

The intake nurse was just annoying. The hospital whose ER we use is the same one we use for labs, and they totally lost his files, so they have nothing on him. The first words out of my mouth with any new person walking in the room were “he’s a kidney transplant recipient.” So this was my conversation with intake:
“He’s a kidney transplant recipient.”
“ok, let me update his records here. Has he had any surgeries?”
In my dreams, I replied with, “No, at UI they’ve developed a revolutionary new technique where they teleport the kidney directly into the recipient’s abdomen. It’s amazing.”
In reality, I said, “he’s had 14 surgeries, do you want dates and details, or just the general gist of what they’ve been for?”
“I need dates and details.”
“OK, December 7 2011, he had surgery to repair his UPJ obstruction in his left kidney. December 9, 2011, he had surgery to put in a Broviac and a PD catheter.”
“does he still have the Broviac?”
“no”
“when did that come out?”
“I’ll get to it.”
“Does he still ahve the PD catheter?”
“No. He doesn’t have ANY dialysis catheters at this point because he has a working kidney, but he went through four catheters total, and one revision of an existing catheter.”
“Ok, what were that dates on those?”

OMG, lady. I have a list here. In chronological order. Do you want to shut up and just let me read it to you, or do you want to keep interrupting??

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2 responses to “Yikes, Teddy!!

  1. Beverly says:

    Those breath holding spells are killer! My heart baby (she’s 4 now) does that and it scares the bejeezus out of us, even when we *know and expect* it to happen. Here’s hoping Teddy won’t have more of them.

  2. Stacey says:

    I had a preschooler go down with one of those types of episodes (got hurt, cried, got stiff as a board and fell over with her eyes rolled back). She had come to by the time my associate and I got around the table to her. Her dad referred to it as a seizure (I see someone else noted a similar story on your facebook post yesterday). Scary stuff for me. She didn’t seem too phased, just tired afterward. And her dad had witnessed it enough that he wasn’t really phased either. Take care, Sarah. Teddy, we all realize how special you are–you don’t need to send your Mama into an early grave.

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