Our Teddy Bear's Journey

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

I am tired and I hate this place

on August 12, 2012

Normally, I love our hospital. I mean, it’s not my preference to be here, but if we need to be here, it’s a nice place. I like the nurses (mostly), we’ve not had any of the bad experiences I read about online with other kidney mamas. They rarely really mess things up, and I’ve found the nurses to generally be flexible with meds and vitals and whatnot. I really genuinely like everyone on our nephrology team, which is a real blessing. The doctors here on the floor GENERALLY speaking have not had ego issues with not being in charge of his care, as I’ve read other parents struggling with.

So, usually happy.

But I am so sick of being here. One of the nurses we passed today said “oh, he’s getting so big!” and I”m like, for the love of all things holy, you just saw him less than a month ago. And, bloody hell people, tomorrow is his NINTH surgery. NINE!! He’s averaging just over 1/month. That’s too many.

And this trip, maybe I’m just grumpy. I know I’m tired. 8 plus months of sleep depravation are starting to catch up to me. Just over a year ago, we first learned about his kidney issue and it’s been a lot of stress since then – that’s got to be wearing down my reserves. But everyone seems hell-bent on pissing me off this afternoon/evening.

Because I know all of my 3.4 readers want to listen to me bitch…

– The nurse who accessed his port MISSED. She missed the port. MISSED IT. Dude, it’s a huge knob that sticks out of his chest. It’s practically got a target painted on it. You can still see at least two old needle marks kind of showing you approx where the needle should go. How do you miss it?? What the hell? This AFTER she putzed around for about 20 minutes while the other nurse was holding him down, and I keep asking if they’re not quite ready to start, should I just hold him, because I know he’s got a timer. He’s patient about lying down for about 10 minutes, and then after that, show’s over. If you let that 10 minutes run out before you’ve done anything, you’re in for some trouble.

– Junior residents. What purpose do they serve? Ok, I know, they need to learn, too. But seriously. I am more of a doctor than these people. I was more of a doctor than they were even before all this with Teddy.

– So his eye is pink. Suddenly Miss Teen Iowa… errr… the junior resident… is convinced it’s pinkeye. He’s had this before and it always turns out to be that tear duct. Every time I think “oh my god, it’s PINKEYE!!” then the next day, it’s crusty and swollen and not pinkeye. But she glances at it and, evidently based on no evidence other than its color, says “looks like pinkeye.”

– He’s got bloody, mucousy poop. That’s not Doctor Barbie’s fault, but I’m going to blame it on her, anyway. They’re doing CDiff cultures, which is good, but which will probably prevent him from ever pooping again. (Last time he had diarrhea from the antibiotics, they decided to do Cdiff cultures, and then he stopped pooping entirely, but he was on isolation until they could do a culture. It was funny and maddening all at the same time but I’m not in as good of a mood this time.)

– He is supposed to be here just for the night. My (small) suitcase has in it food and clothes for one night. If they don’t let us out of here tomorrow because of any of the above, I’m going to be in some trouble. Not to mention, the ONLY skirt I have with me has not only been vomited on, but had root beer spilled literally ALL OVER the front of it at lunch, and then also a fair amout of breastmilk leaked onto it from pumping. I thought I could just wear my pajama bottoms if I needed to, until Teddy vomited INTO MY CROTCH. Yes, it looks like I peed my pants. Thanks, kid. I’m sure this is also the junior resident’s fault somehow.

– So we’re changing his GERD medicine from Prevacid to Pepcid and twice a day. I don’t know why. I am against this change. Prevacid’s been working. He hasn’t had a gagging/retching/crying/arching/chest grabbing dramatic thing for a while now. He still vomits, but it’s just puking, not heart-wrenching drama. And suddenly we’re changing things. I mean, heck, why not, right? It’s not as if having another surgery and then starting dialysis is going to be kind of wearying on his little body or anything, let’s throw another monkey wrench into the whole deal, eh?

– Night nurse filled his feeding pump bag partway (and they never use an ice pack, they just let it hang out a room temp and that always bugs me) and then set the half full bottle down on the counter and then left. HELLO! I work hard for that milk, dear. You may NOT waste it like that.

– With the blood in the poop thing, they keep asking about his diet and if it’s changed. Jr Barbie Resident asked if his “formula” had changed. Now, I know that “formula” is simply a mixture… but he’s not on FORMULA. He’s on BREASTMILK. And yes, it has changed. It changes every day. It changes every hour (not so much for him, since I mix together the milk from an entire day of pumping into one big jar). That’s the nature of breastmilk and if you could please not insult me by calling it formula that would be great. It’s all the same to you only because you’ve never pumped 12 times a day.

harumph. And I missed most of the closing ceremonies talking to stupid doctors and nurses.

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5 responses to “I am tired and I hate this place

  1. Stacey Feehan says:

    Sarah, you have been unbelievable over the last year. Sometimes everything just seems to fall apart at once, and unfortunately this seems to be your weekend. You, my dear, are weary and sleep deprived. You are worried about this surgery. And for some crazy reason the less competent and more irritating medical staff seems to be on duty. Ugh!

    I hope you can get some rest tonight. I hope the more experienced medical staff is back on duty tomorrow and they can listen and answer your questions. Being irritated (even with reason) won’t help your milk supply or Teddy’s demeanor. Take some deep breaths, put on some calming music or tv, drink some tea, and hold that baby. Cry if you need to. Try to relax and refocus.

    (I bet someone can get you some clothes and food, if needed. I know you have had friends volunteer to do that before. Ask them.)

    Love to you. Prayers as always. Take care.

  2. Those aren’t just junior residents they’re BRAND new residents– those first year residents just started in July! Not only that, but the senior residents are newly promoted too…..

  3. sarahtar says:

    I don’t think I blogged about the senior resident last time we were here – who would have been JUST BARELY turned a senior resident (I forgot about July, Sarah!). He was all cocky and sure of himself and showing off for/flirting with this cute junior resident. Gag. I wanted to ask him if he needed me to leave the room so they could make out. And while he’s all showing off, he got several things completely wrong, so I’m standing there correcting him. It was sooo funny.

  4. Tisa says:

    i’m headed your way on tuesday a.m.–holler if you do ended up needing stuff from home, please!

  5. Holly says:

    So sorry you have to deal with all of this. It’s not fair. It makes me hug my babies tighter each day knowing it could be so much worse. I hope Teddy is comfortable.

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