We started off bright and early at 9 am in Ultrasound. The fact that I only had 3.5 hours of sleep will come into play in my story, so I’ll get that out right now. I’ve been exhausted all week and the short sleep didn’t help.
At 9:30 the nice lady who sits at the desk at ultrasound explained to me that his U/S orders had gotten messed up and they only had orders for a renal ultrasound, not a liver ultrasound, so they were trying to straighten that out. We finally got called back, and Teddy started hysterically crying (the I’m Afraid cry) pretty much immediately. After 20 minutes or so, he seemed to have realized that he had, so far, survived, and calmed down a bit. He hated the gel on him, but I checked and it was a good temp – not too hot, not too cold. The liver ultrasound told me nothing. I have no idea what a liver’s supposed to look like.
Left there finally at 10:15. (Our first doctor appt with GI was for 10. Let’s note that this was NOT MY FAULT.)
Check in at clinic at 10:20. Yes, I stopped to pee.
Evidently, what I SHOULD have done was leave ultrasound at 9:40 (note: before we even got started) so that I wouldn’t be late for our check in time in the clinic. I certainly should not have taken time to pee. SO, we checked in, with the gal who checked us in telling us that a) we were late and b) we had missed an 8:00 appointment. No, I said, the 8:00 appt got rescheduled. No, she said, it didn’t. Well, I said, the latest phone call I received, and the information in his MyChart, says otherwise. If we missed it, I’m sorry, but we were plainly told our first appointment today was 9:00 in ultrasound and we’ve just come from there. “hm, well, go sit down.” OK.
Then one of our regular clinic nurses walks by and sees us sitting there and checks and sees that we’re not actually checked in. I get called back to the check in station. “The nurse asked me why we hadn’t checked Teddy in, but nobody here knew you guys had arrived – you need to check in with the desk here when you arrive.” Um, hello, lady, I literally JUST got done talking with the other gal.
So I go sit down again.
Let me also note that I didn’t have time to reblend Teddy’s food this AM, which means we’re dealing with a chunky blend today. Small chunks, but if you use a pump and blended foods, you know that thick and smooth is oK but runny and chunky is not ok. That damn thing beeped constantly all day. I
Alright. Get back to a room, nurse tells us we need to run to the lab quick, GI wants to repeat the liver enzymes. OK, fine. We’re supposed to get nursing services for labs, but whatever. I feel like it’s a total crap shoot on whether nursing or phlebotomy does a better job these days, so either one is fine. “Renal’s going to want labs, too, do you have his reqs for renal?” No, she says, we can get those later. Um, I say, no, I’m only going to go the lab once today, so if we can just get them all done now, that’d be great. Well, she says, GI really wants these done right away and I don’t have the renal reqs yet. OK, I say, then it sounds like we need to get the renal reqs in a hurry! I mean, honestly.
So she stomps off to track down the renal reqs. By this time it’s past 10:30. She also mentions offhand that he’ll need to be cathed for a urine culture. I ask if we can just use a bag. She says the orders say Catheter, but do I want her to double check? Yes, please.
At the lab, the male phlebotomist who is usually kind of… interesting… starts in on me about the UA. Does he have a bag on? No, he might need to be cathed. Well, we prefer bagging them before we poke them. Well, I’m not really eager to tape a bag on his balls unless I know for sure that’s what we need to do, so we’ll just wait. But, he says, we really prefer to have the bag on first.
At this point, I’ve freaking HAD IT. NOBODY seems to have the SLIGHTEST idea what is going on. I’m stressed out and tired. And I say very grumpily “look, the nurse told me he might need to have a catheter for the urine specimen. We’re waiting to find out for sure. Can we just do the labs so everyone will stop jumping down my throat about how the labs need to be done immediately and we can bag him later if needed? He’s got high output renal failure – producing pee is one thing he does REALLY WELL and I’m confident we won’t miss our chance if he’s not bagged now.”
Um… ok, sure. THANK YOU.
Enter second phlebotomist. I carry T to the bed in the lab. The bed is what we prefer. I don’t have to do as much wrangling and holding him down, he can see me, I can see him, he can’t wiggle away as easily, he can’t pull his arm away as easily, etc. Phlebotomist wants us in the chair. I say no. She says she prefers the chair. I say that I prefer the bed. She says babies kick too much on the bed. I tell her I could give a sh*t less if he kicks her in the face because I’m really tired of arguing with everyone at this place today.
Did you totally believe me? No, I did not say that.
I said in a voice only slightly less grumpy than the one I pulled out for the boy phlebotomist, “He does better in the bed so unless you’re not able to do it with him on the bed at ALL, that’s what we’d strongly prefer to do.” “oh, ok, fine.” THANK YOU.
Male phlebotomist says it sounds like we’ve had a stressful day. I laughed the bitter laugh of the woman who should own a tshirt saying something like “NOT IN THE MOOD FOR ANY CRAP TODAY, PLEASE KEEP BACK AT LEAST 5 FEET.” I apologized and said that nothing seems to have gone right so far today and everyone’s trying to blame us and I’m just grumpy and tired of arguing with people. Woman phlebotomist can’t find a vein. Says so. Looks at me. I look back. She’s looking at me as if she wants me to do something about it. Oh, ok, gosh, yes, I forgot to bring my Magic Fairy Wand that makes OverUsed Toddler Veins Magically Appear.
Then she tried his wrist and got it in one poke and I instantly forgave her for being mean about the chair and I apologized and thanked her for the awesome lab draw.
Zip back over to the clinic. Wait. Wait. Wait. Wait. Wait. Wait. 11:15 or so, our nephrologist comes in (please note, we’ve entirely missed our 10:00 GI appointment). We talk for a bit, nothing overly important. Labs, some med changes. Yes, he does need to be cathed for the UA, so we do that. (His UA pre-transplant was from “fluff.” That surprised me, to be honest, they NEVER use fluff with him. Fluff is like cotton they stick in your diaper and then they squeeze the pee out of it. His sample grew some 5 kinds of exotic bugs. They wanted to be extra double sure that it was just a contaminated sample.)
I filled out humorous paperwork for GI. (“has he ever had surgery” “has he ever been admitted to the hospital.” I think parents should get extra points for creatively funny and sarcastic answers. Like “gee, no,” or “we are on a first name basis with most of the pre-op staff.” There was also the amusing list of health conditions – I was tempted to circle “unexpected weight gain” just for laughs.)
GI came. Thunked his belly. Said the ultrasound looked normal, and his labs all looked ok. They tested a wide variety of viruses and all kinds of hepatitis. His enzymes came down, but are still elevated. They’ve checked everything obvious and everything checks out OK. (That’s the GOOD news!!) The next step is to talk to transplant and see what they want to do. GI would recommend either watching it for a few months (!!) or the next step would be something like a liver biopsy (!!!). I instantly sprouted hives at the thought of either of those alternatives. MONTHS?!? I could cry. Is it sick that I’d rather do a biopsy than wait months?
Then he said that they want us back in 2 weeks to recheck enzymes and he suggested we do labs first thing when we get here. OK, jerkface, what do you think I did? I didn’t get here and check in and then go hang out at the bar. For the love of all things holy, I go where they tell me. You want the labs done before we do anything else (like weight etc), you’re the doctor. You tell them.
Last was Dr Kim from Infectious Diseases. I really liked her. She was pleasant and we just sat and chatted for about an hour about all of the options and what had been checked and what hadn’t been checked and what we could do and what she’d recommend. She was very personable. It was a nice way to end the stressful day.
As I said, I’m running on 3.5 hours of sleep and I’m still having stress and anxiety from the whole “oh, yeah, just kidding about that whole life-saving transplant” thing. I’m naturally sarcastic, and it just gets worse when I’m feeling snarky.
So the plan from here:
Come back in 2 weeks and recheck labs and liver enzymes. Hopefully at that point, I won’t have died of a stress-related heart attack, and they’ll have a clearer plan for transplant. Our donor has a busy summer and I’m afraid we’re going to screw it all up for her. 😦