Rich was discharged today. He has spent 19 of the past 21 days in the hospital. As he often says, “it’s a helluva lot easier getting into the place than it is to get out.”
No shit.
I should be grateful; this was only a four-hour discharge. We’ve had worse. In fact we didn’t know he was being discharged until hospital staff we’ve never met before came in to ask us if we needed any help setting up our home infusion services since he was being discharged today. She asked like she was less sure of the discharge than anything else. I just laughed. “I’m just the wife,” I told her, “nobody tells me anything.”
At 2 pm his nurse since 7 am came in and asked us if he was being discharged today. Sometimes I can’t tell if these people scare me or annoy me.
While I would love to provide staff with the answers to these burning questions, I’m not the Delphi.
At 3 pm a Care Manager comes in to tell us he’s being discharged. Hmm. You’re the one who left me a voice mail to that effect two days ago. Really? Well pardon me if I totally ignore your jokes until I see the discharge paperwork and a wheelchair rolling in.
Next thing I know we’ve got two Care Managers and an RN telling us that “yes, Virginia, there is a Santa Claus and you’ll be out of here in thirty minutes. ”
I actually laughed out loud and said, “oh, let me set my watch.” Apparently someone tattooed “STUPID” on my head last night while I was sleeping. To prove themselves they hand me three prescriptions. Okay, I’ll bite. I start asking questions on all the things I will need to know about home care. Well, that was a hot mess, because no one in the room had the answers. Like, do we have orders for his PICC line care? Are you sending me home with a bag of IV dextrose in case he crashes again, or do I just call 911? How often do I have to check his sugar?
They think it’s every two-hour blood sugar checks. “Well, that’s not going to happen,” I say with a smile that I saw on a serial killer on an episode of Law and Order Criminal Intent. They stare at me. I then explain the concept of sleep hygiene, REM requirements, the use of sleep deprivation as a form of torture and as it relates to Quality of Life….“So I just need ya’ll to understand that when sleep deprivation takes over and I wake up to find him in a hypoglycemic coma AGAIN, I will call the squad and when we get back here I WILL hold a Come to Jesus Meeting with everyone concerned.” Closing with my best Forrest Gump smile.
Now they check the chart, and they’re going to pull the PICC line so no safety stash of dextrose because he’s been stable for twelve (woo-hoo!) hours now, and suddenly his home going orders are for every FOUR hour blood sugar checks. Well, la-de-frickin-da…. What was I worried about?!?!?! Oh yeah, after the last discharge he was stable for 48 hours before I had to call the squad.
They give me the bag of medication from the hospital pharmacy for his every 8-hour injections. I ask if I need syringes. “no, no, this medication is in pre-drawn syringes.” And I believe them, because at his last hospital discharge it was in pre-drawn syringes.
I then begin my Hoover routine where I make huge sucking noises in their general direction to assure them that they are wonderful and I would grovel before them if I weren’t afraid of embarrassing them.
An hour and a half later the nurse comes in to go over the discharge paperwork.
HOLD THE PHONE! I am such a bitch because I’m crossing t’s and dotting I’s and The Discharge orders do NOT match the prescriptions they’ve given me, and she can’t find anything in the chart that explains a change in dosing directions—once daily, twice daily, which is it? She’s off to page the doctor. Nice.
Some time later she comes back, doctors want dosing as per the scripts they just wrote, not what they’ve been doing up till now. Okee-dokee. Then she pulls the PICC line. I head out to get the car. About half way home we realize we won’t make it to the pharmacy before they close. But no worries, we have what we need until tomorrow.
I am on pins and needles. Rich curls up on the couch beside me and the instant his breathing sounds ANYTHING like his coma breathing I nudge him and ask if he’s okay. Now I’m controlling his sleep deprivation. This sucks.
We do his 10:30 high protein snack and his bedtime meds. He gets the pre-filled injections from the bag in the fridge and …. Wait for it…… the medication is in vials, NOT –pre-filled syringes. Not being an IV drug user myself, I find I am totally without syringes. Don’t I feel stupid. Just before my head explodes, I dive back into the fridge and find two syringes of the med from his last discharge that equal the one dose he needs. So we’re okay for tonight, but his net dose is due at 7 am and the pharmacy doesn’t open until 8 and by the time I get it back home it will be 9 am, and with falling blood sugars every minute counts. … It is 11:30 pm.
I pull his Care Manager’s card out of my pocket and I dial her number. Rich points out that she’s not there. Duh. I don’t want to talk to the bitch; I just want to leave a message. “…this is Rich Eitner’s wife. Remember when you assured me I didn’t need syringes because the octreotide is in pre-drawn syringes? Well it’s time for his bedtime dose, I just opened the bag and the medication is in vials and I don’t have syringes. Just so you know. Thank you, and have a nice weekend.”
And they wonder why I don’t have the warm fuzzies???? I’d just like to point out that he was stable for a whole twelve hours before discharge. And they changed the dosing of his meds JUST before they sent him home.
It’s now 1 am and I don’t want to go to sleep. Worse, I don’t want to go upstairs and check on him because I’m afraid of what I’ll find and more afraid of my reaction to what I might find.
I need to stop thinking. I need to surrender to this tsunami and look forward to the meteorite storm that’s heading my way. I need to drink the Kool-aid. I had no idea how much strength it takes just to Believe. Devotedly, helplessly and unfailingly. My problem is that I’m not a passive believer. I’m a Warrior Believer.
It’s 1:05 am. It is Dec 3, 2011. Today is 1,000 days with cancer.
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