Our Teddy Bear's Journey

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

Kidney Donation: Organ donor matching

Wondered how they do organ donor matching? Article here in plain English.

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Pics from our Omaha weekend

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My hands are SOOOO interesting.

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look at those baby feet!

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Genna held his hand to help him go to sleep.

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The Bigs loved swimming in the hotel pool. Teddy couldn’t get in due to his new PD cath (once it heals, he CAN go in a swimming pool, and he can shower off afterwards.)

swimming

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Team Teddybear shirts

I am placing an order for some Tshirts. They will have an image of a Kidney and the words Team Teddybear.

I originally was making them for people who are walking with us in the Kidney Walk (see link to right), but anyone can buy one. I’m getting ready to put the order in tomorrow. Right now, the prices are: $10 for kids and $12 for adults, but the price will drop a bit more if we get enough more shirts. That price includes a small markup (about $1.50), which will go into the Teddybear Transplant fund (and will be routed through COTA once we get that going).

I am ordering both Men’s shirts and Ladies’ shirts, so please tell me which one you want and what size. (The ladies shirts are a more feminine cut but a bit shorter than the mens shirts, which are the typical boxy Tshirt shape.) The shirts are Gildan brand, Kiwi color, 6.1 oz 100% cotton. We could go with a thinner cotton and save about $1.50 per shirt, but the heavier weight is worth the expense in my opinion. The 4.5 oz cottons tend to fall apart pretty quickly.

Please just respond here or email me if you want one. Obviously, if you need me to mail them to you, there will also be postage costs.

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This week’s installment of Will He Or Won’t He Start Dialysis….

His labs looked good yesterday during our clinic visit, and BUN had dropped to 37. We decided to add more fluid – an extra 5 ml/hour over night – and SOME of the beneprotein – and see how things look next week. Yay!

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The Blood Pressure Machine

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So this is our blood pressure machine. It’s about the size of, hmmm, a medium flat rate box from the USPS. Much heavier, though. We take Teddy’s blood pressure every morning, and when I say “we,” I mean, of course, me. I try to do it while he’s asleep, but that’s not always possible. In his old age, he’s starting to get accustomed to the blood pressure machine and is usually calm for it as long as it gets it on the first try. He has no patience for 2-3 attempts.

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Reassess

So, when we were discharged a week ago, Dr. Jetton said that she would see us for our regular clinic appointment and we’d reassess. I tried to pretend I hadn’t heard her.

Wednesday, at our regular clinic appt, everything looked OK. He had gained a bit of weight, not much, but some. His hemoglobin was 8.4 or something, which is atrocious, but it’s up. But his BUN was 77. That’s pretty high, and the general cutoff for dialysis in our clinic is 70. Yeah.

There was a lot of hemming and hawing and worried looking around, but after I pointed out Wally’s birthday is Sunday, we ultimately decided to take a sort of Band-Aid approach. We upped his intake more, and cut out his supplemental protein. (BUN is a byproduct of breaking down protein. You can lower it by essentially diluting it with more liquid, and you can lower it by restricting protein.) The goal is to keep him healthy enough to last another week so we get past Wally’s birthday.

The original plan was to just plan on an admit next Wednesday and get started. In the PICU. (I’m not going to lie, I’m nervous about the PICU. First, it seems like a very sad place. Second, it’s all new nurses, new routines, new rules, new procedures. I am comfortable on the peds floor, and I’m at least quite familiar with the NICU. PICU is all new.) But I emailed Dr. Jetton last night and asked if she thought it would be reasonable to reassess first again, rather than just automatically admit. If his BUN remains high, despite our efforts, then we will know (I will know) for certain that it’s his kidney finally crapping out.

But if his BUN is lowered, then I’m going to wonder if the problem is just that he’s on an inadequate amount of fluid intake and he was actually just dehydrated. So if his BUN is lower, we will try more fluid and adding the protein back in and giving it another week.  Sigh. We’ll see.

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New Feeding Pump

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So we’re still waiting for the backpack carrier that goes with this pump, but in the meantime, here is our new feeding pump. It’s about the size of my hand. I like this pump’s small size, but I must confess, I like the simplicity of the dial on the old one:

The picture of the new pump above shows it on our IV pole, which is where it lives when I’m sleeping in the other bedroom. When I’m back in with everyone else (which I am now), it rests on the nightstand, and the bag hangs from the window latch.

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Medicine

Every day starts with unhooking from the feeding pump and then administering morning meds. After that, I wash bottles and syringes and draw meds for the next 24 hours.

So this is the box I use to hold all the meds, except the ones that go in the fridge. There’s also the big can of Beneprotein there on the left.

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I draw up a days’ worth and keep them in these little cups, one for mid-day, one for evening, and one for morning. The cup on the left is just some extra syringes. This box also holds the giant syringe for venting the Gtube, the steriod cream for granulation tissue around the tube, and the gent cream (antibiotic) for the PD catheter exit site.

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Surprise!

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Two incisions! Yeah, two incisions were hiding under his giant tegaderm. I suspect he reopened Teddy’s original incision first, and then ultimately couldn’t use that hole, and made the second incision.

We were discharged today! Coming home is always kind of stressful, but everyone is in bed now. Teddy and I are in our separate room just for tonight, since I know this bed has germ free sheets. We are both stil up, but everyone in the other room is snoring away…

Good to be home.

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Still here

2012-04-05 14.19.35

So, Teddy has high blood pressure. They’ve been inching up with each hospital visit (the only time he ever gets his BP tested). This time, they’ve been super high even when he’s really calm and not crying. It is very common in kidney failure.

So he’s now on blood pressure medicine.

We’ll take a blood pressure machine home with us and check his pressure at home and he’ll continue on the meds for the foreseeable future.

Otherwise, we are kind of hanging out today. His weight has stabilized (he was down from all the vomiting, then waaaay up from IV fluid, and now he seems to have leveled out at a point that seems like a true weight for him. His BUN was waaay low (good) but it was artificially low from the IV fluids. Yesterday, it was back up to mid-40s, with the creatinine following at 1.9. Yesterday, he got the Venofer (iron) infusion. Today, IVIG. Tomorrow, another venofer.

Then home!

Dr. J said that there’s very little that could happen that would prevent our going home tomorrow. Even a high BUN, she’ll still let us go home. We wouldn’t get to stay, lol, but we could go for a few days. Sigh. I know we’ve got at least one more hospital stay in the not to distant future, but this is starting to wear on me.

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