Our Teddy Bear's Journey

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

Great morning

on July 24, 2013

Teddy had a GREAT morning. I’ve been slacking on the blogging – he’s been so needy, I’ve been unable to get my computer out at all.

But this morning, he woke up and was fussy for a bit and then he was playful and happy for about 3 hours!! in a row!! It was like I had my Teddy back finally. He still can just lay on his back, but he was HAPPY!!

2013-07-24 11.08.45

2013-07-24 10.41.15

Here’s a recap of the last few days: Monday, he got his IJ line pulled, and his foley catheter, and they placed a PICC line. His IJ was coming awkwardly out of his neck, so getting rid of that was AWESOME. Then we were transferred back down to the regular peds floor – yay!

I have a kidney stone I’ve been trying to deal with since early Saturday. I ended up in the ER Sunday and Sunday, Monday, and Tuesday are kind of a blur of pain, nausea, and narcotic-induced fog. I’ve finally hit the sweet spot of a good dose of pain meds that covers most of the blinding pain and doesn’t make me so nauseous that I can’t eat or drink. 🙂

Teddy’s been having trouble with breathing, but not so much that people are concerned. He’s needed some oxygen overnights to keep his sats up, but he’s been ok for the last night or two. 🙂 His kidney takes up so much space in his abdomen that it presses up on his diaphragm, reducing his lung capacity.

Though we were able to have a big bed up in the PICU, they won’t let us have one here on the floor, so I’ve been sleeping in his crib. Makes it hard with the kidney stone, and it means that if I get overwhelmed with pain or nausea during the night, too bad, because daddy can’t snuggle in the crib. 😦 I’m pretty pissed about this, actually. I get the safety aspect (once he turns 2, he’ll magically be safe in a big bed, evidently), but he’s not capable of rolling over right now, let alone climbing out of bed. huff.

I still can’t hold him. I mean, I am now *allowed* to hold him, but he’s so uncomfortable. He gets stiff and afraid when we move him for any reason, and he just can’t/won’t relax to be held. He prefers now to snuggle against my leg or arm while I sit or lay next to him in the crib. And that’s fine. His belly is still pretty sore – that’s a HUGE incision he has, and he’s still kind of swelled up in the belly, and it’s just sore all around.

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