Death By 10,000 Papercuts

That’s what the last week has felt like.


Friday morning, we had labs locally. Teddy’s always been a hard poke. The lab gal couldn’t find ANYTHING on him. She finally went into the artery where his arterial line had been, despite the big bruise. That was Try #4. Oy. Poor Teddy. I mean, just picture holding your baby on your lap, sort of to comfort, but also to help keep arms still, and head out of the way. There’s really no distracting him these days – he refuses to be distracted. He WANTS to be upset. It’s like part of him is also having a little temper tantrum over the unfairness of it all. And I can’t blame him. And this goes on for about 45 minutes. Sigh.

Friday night, we actually went grocery shopping. Yes, we took Teddy to a store. Technically, this is totally allowed, as long as we avoid busy times. I think we went late enough, it was fine. I kept him in the carrier. He didn’t touch anything. We all washed really well.

Monday, we had labs again. And urine. The labs didn’t go any better. They eventually gave up and did a finger poke. Then he of course won’t allow bandages on him, so he bit the gauze off his finger and proceeded to bleed all over me, himself, his carseat, etc. He gets so sweaty from crying that the pee bag wouldn’t stick to him, so they sent us home with an additional 4 bags and a cup and instructions to just drop the pee back off any time that day once we got it. We used every single one of those bags, but finally got some pee in one of them. 🙂

His incision is goopier and greener, so I’m supposed to start changing the dressing three times a week. I’m still quite nervous about it. (not the process of changing the dressing – the poking gauze into  hole in my kid’s abdomen part has started to be less icky the more I do it – but the incision itself.)

He is peeing more, and better.

I can’t get his new blends to where the doctor wants them – 1000 mg of phosphorous is proving to be too great of a challenge.

He’s still pooping a LOT. I’m seriously changing diapers 5-6 times a night. Poop diapers.


Dragging the kids to the lab is getting tedious. I’m going to ask them at clinic on Thursday how much longer we’ll be doing local labs weekly, and I might consider hiring someone to come hang out with the kids every Monday morning while I take Teddy over. Just because it will be easier. And Genna actually asked. Genna, miss Terrified Of Being Apart From Mom these days. Genna, miss Never Wanted A Babysitter And Will Only Reluctantly Tolerate Grandma or Other Family. She asked. For a babysitter.

I think she’s starting to get a little freaked out about all the torture she’s forced to watch, to be honest.

And I keep waiting for things to calm down a wee bit to take care of a few things with MY health. I need to go in for imaging to see what’s up with my kidney (did I pass the stone, or is it still in there) and my high creatinine actually has me a bit concerned. My heart’s been doing funny things since March and, while I’m relatively certain it’s just stress, I need to have it checked out.

And we need to start family counseling. I think the kids have issues, and I think it will help. They’ve been through so much, and it’s really taking a toll. I don’t want to get into details, but it’s clear at this point that they both have stress and anxiety-related problems, and I’m too stressed and anxious to be much help, lol.  But, like usual, this is going to have to wait. I can’t add another thing right now.


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