Our Teddy Bear's Journey

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

Monday, or There and Back Again,

on August 14, 2012

So….

After we were admitted on Sunday, I noticed Teddy’s poop appeared to have blood in it. And it was really snotty looking. So they decide to test for C-Diff. Monday morning at 3 while I was up pumping, the nurse came in and said that a while back, the test result had come back positive, and so she had let the Surgery Resident know already and we were waiting to hear back if they were going to proceed with the surgery. We didn’t hear.

At 7, all of a sudden, the transport person was there to take us down to pre-op. Ok. So I guess we’re going. I was in the middle of pumping and hadn’t eaten or changed my clothes. (They usually call first.)

At 7:20 ish, a nurse walks in and tells the nurse who’s taking our medical history information that his surgery is cancelled and that mom already knew that.

What? Realizing that I still had leftover grumpiness from the previous day and that I was also tired and still wearing pajamas, I didn’t really say much other than “um… no. No I did not know.” But really? REALLY? How big of an idiot do I look like? If I knew his surgery was cancelled, would I really have walked all the way up there with him and not said anything to anybody?? (note, I know some people would have, and the nurses have no way to tell that I’m not, in fact, an idiot. Have considered getting a tattoo on my forehead, though. “Not an Idiot.”)

So they said they’d send someone from surgery in to talk to me. And my hungry baby who hadn’t eaten anything since midnight. (In reality, he could have cared less. He doesn’t ever seem to get hungry any more. But he SHOULD have been hungry, and skipping that much food just means that I had that much more of a task ahead of me to get him all of his food that day.) A half hour later, I texted Randy and told him they had 10 minutes before I put him back in the little bed and pushed him back down to our room myself. I’m certain the surgery people aren’t crippled and can clearly walk up to our room and find us. 10 minutes later – to the minute – in walks a surgery resident.

Who sat there and told me that NOBODY had told surgery until 7 or so that morning. I told him I found that hard to believe when I was up at 3, and our nurse told me at that time that she had already called and spoken to the peds surgery resident. He said that would have been him. So I said, ok, then, she called and told you before 3 am. He never admitted that he had just told me a bald-faced lie, but he didn’t return to his 7 am story, either. I really laid into him, but in a polite way. I asked him if he thought that this was providing good care. That sitting around and not making a decision for 4 hours was a good standard of care? If withholding food from an infant with kidney failure for 8 hours for no reason was a good thing? If he’d like it if somebody did that to him. I didn’t disagree with the decision (I was surprised we were going), but I thought it was handled really poorly. I would have probably accepted it had he come in and said anything OTHER THAN “but nobody told me.” Liar. I hate being lied to. Found out later, he HAD gotten the call and had decided that it wasn’t worth calling the surgeon to ask, so he waited to find out until the surgeon came in. And maybe that was the right call – I mean, I’d prefer the surgeons be well-rested. But then just say that. Don’t sit there and lie to me. He kept saying “well, what’s done is done” and while that’s true, it’s also not an acceptable way to handle explaining your decision making process to an irate parent.

NEWS FLASH, Medical Personnel: Just tell us the truth. Don’t lie to cover your butt. You just end up looking like a jerk and then I don’t believe anything you say after that.

So we went back to our room, someone gave me permission to feed him (which made me laugh, because I was pretty much going to do it anyway), and then he slept for the next 2 hours while I held him, still did not get breakfast, and didn’t change my clothes.

Several hours of sitting around later, we were discharged at 3, discovered that the RMDH sent the shuttle for me at 2:30 despite the nurse telling them I wouldn’t be ready until 3, waited 40 minutes for the shuttle to come back, packed up our things, decided to vacuum the RMDH even though that wasn’t even our assigned task for the day just because we had some free time, took over an hour doing that and then cleaning the vacuum because I had noticed it wasn’t doing a great job of actually vacuuming, and THEN – THEN – at 8:30 when Randy finally was able to come get me, the little tart running the desk (aka chatting with her friend who was eating food from the kitchen) checked our room and told me I needed to go vacuum. I said I already did. “Well, it looks like you just need to run the vacuum over it one more time.” “Maybe you need to get your vacuum repaired. I vacuumed the whole house including my room and noticed that the Check Roller light was on, even though I tried to clean out the roller.” “mm. Well, go vacuum one more time.”

Decided if she was going to treat me like I was 12, I could absolutely live up to that expectation. Took the vacuum (and Teddy, and his feeding pump, and his diaper bag) back to our room, plugged in the vacuum, turned it on, and then sat down at the desk and filled out the guest satisfaction survey where I suggested they ought to consider having their vacuum repaired or replaced before giving their 20 year old volunteers the authority to criticize the cleaning skills of their adult guests who might have been vacuuming for twice as long as the volunteers have even been alive. I realize I don’t vacuum at home (hardwood floors, I just sweep and mop) but I grew up with carpet and I know how to vacuum.

I’d like to say I’m not normally such a snot, but… I am. I had been trying to see our whole hospital experience in a positive light all afternoon, and doing something good for the residents at the House made me feel good and then Miss Tart had to crap all over that. Chances of me feeling like I want to complete a bunch of unassigned cleaning tasks at the House in the future? SLIM. I’ve got socks that need to be knit, I don’t need to be vacuuming the halls of the RMDH if it goes completely unappreciated.

So… we loaded everything back up in the car and drove it home, paid for 4 nights at the RMD House that we didn’t use, and I guess we’ll start all over in a few weeks.

The plan is, antibiotics for 10 days for the C-Diff (on top of the 2 he was already on), then retest his poop and reschedule the surgery. I am waiting to hear if we can push it back to September, since we won’t have our child care that last week in September.

 

(Also, to add to my list of complaining in the last post – in the morning after The Surgery That Wasn’t, our nurse was getting his meds ready and they always send one up in a bottle instead of a syringe because it’s light sensitive and then the nurse draws it up, and she says, “Oh, they didn’t send enough of this” and I asked what it was. “Calcitriol.” “Well, how much did they send?” “It says the dose is 1.5 and they only sent .5” “No, it’s only .5” “It says on the computer 1.5” “Well, call someone and find out because I’m not going to give him 3 times the dose unless someone from nephrology confirms that’s what they want.”  Turns out, she was looking at the wrong thing. mmm hmmm. This is why I look at each and every syringe they bring for him, and usually give them to him myself.)

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