The "L" Word

If I were getting paid, I could not make this shit up.

I was supposed to restart the vancomycin IV Thursday. I didn't. Rich was actually showing some signs of improvement. I woke him this morning and asked him what he wanted to do. Short discussion. We decided we weren't going to do any more vanc without another blood draw to determine the current level. There were several issues. Rich started making phone calls.

First—the doctor who got wrangled into overseeing the drainage tube when no one else wanted to deal with it. The doctor is out of town. Rich explained to his nurse that there has been ZERO drainage for 24 hours and per orders he was calling to report that. Long and short of it, Rich could have an appointment next week. Apparently, the abrupt cessation of drainage was NOT the concern that they had originally conveyed to us.

Sometimes things just don't feel right, so you pursue it a bit further.

Second—Rich called a “friend” who works in radiology and asked her for some advice. Holy Shit, Batman. Radiology placed the drain tube. Today we find out, on the off chance that we called them, that they wrote orders that were sent to the floor PRIOR to Rich's discharge, containing clear orders on how to care for the drain tube, when and where to follow up... in two weeks with radiology so they could examine the site and change the dressing. As a matter of fact, they were wondering why they hadn't heard from us... Are you kidding me?!?!?! We made an appointment for 2 pm.

Third—Richard called our contact in the Infectious Disease Dept. We're not comfortable continuing the IV without another Vanc level being drawn. Yet again I have to explain that Rich does not have symptoms that anyone is comfortable with, but he's having symptoms. And Holy Shit, Batman, this is the first they're hearing of it. No, really? We've been reporting these symptoms since discharge, every time visiting nurse visits. And I'm really sorry that the symptoms don't “make any sense” to YOU, but these are the symptoms, and they subside when you have us hold the vancomycin, and they return and increase three days into resuming the treatment. If I give you a quarter, could you buy a clue? Over an hour and THREE phone calls later, the doctor is telling me to hold ALL the meds until visiting nurse comes on Monday and does another blood draw. Really? And the abrupt cessation of drainage? And the intermittent fevers, headaches, etc? Well, this is the FIRST the doctor is hearing of this. Really?! Well I guess you need to take it up with visiting nurse, because I have been doing everything according to our discharge paperwork. The doctor recommends I take Rich to the ER.

Really? The same ER that had me sign the paperwork to let him go? I ask. And when I take him to the ER, and he is admitted with all the same symptoms he has had and we have reported and no one has addressed, you will address this differently HOW? How will any part of going forward be any different from where we have been? I ask. And I hear him talking, the words in no way correlating to anything I have said or asked

I am SO done. I hear a long, deep sigh escape my lungs and echo in the cell phone at my ear. I think the doctor hears it too. I feel a significant shift in the universe within that sigh. It is a Stepford Sigh. I hear myself responding to everything he says with a light, bright, “okay then”. Each time I respond, the doctor seems more uncomfortable. I no longer care. I've got thirty minutes to get Rich ready and in the car so I can take him to radiology where someone might address the drain tube according to the orders that were written three weeks ago.

It's Two PM and we're in the Radiology waiting room. When the nurse comes to take him back I am ready to implode and somehow she senses this. Like all of a sudden someone is going to pay attention?!?!?!

I had to jump ugly to get them to medicate him for the “adjustment of the drain tube” The nurse explains to me that the doctor doesn't feel it is necessary. I explain to the nurse that if Rich does not get EVERY possible medication for this procedure I will rain down hell and damnation and they won't be able to get security on sight fast enough. I said this calmly and with a smile, but I could feel that my jaw was tightly clenched and something in her eyes told me she was seeing the Fire in my eyes that Rich has spoken of. Ten minutes later she returned to assure me that Rich was receiving the drugs I requested.

I sat in my little corner of radiology and cried. For an hour and a half. Every now and then one of the nurses came out to speak with me. I apologized for being harsh and mean with them and tried to explain what has brought me to this level of frustration. I was told to do NOTHING other than drain the J-P. I have done everything short of offering blow jobs to get answers, information and pain relief for this man (and yes, I actually said that and I'm not ashamed because it's the truth)

They are confused and appalled that we were sent home with NO INSTRUCTIONS on drain care. I don't want to hear it. Seriously? Check out the discharge paperwork. I have a copy of it. They encourage me to contact the hospital's patient advocate program. Like I need permission? I assure them that I am in contact with Rich's “patient advocate”.... oh wait.... that's ME.

Finally they wheel him out of the treatment room on the gurney. The doctor is actually approaching me. Rich is happy. Apparently he has had the drugs I requested for him. Life is Good as far as he's concerned.

I'm trying to enjoy the fact that they are jumping through hoops to lap at my heels. But I can't.

The doctor is explaining that his drain tube was totally blocked. BECAUSE... it was not flushed daily as it should have been because those orders were NOT a part of his discharge. No one told me; no one told visiting nurse. So for 2-1/2 weeks, daily flushing of the drain did not happen. They drained 370 cc of abcess. The doctor is apologizing to me and assuring me that they will “be looking into this situation”. I smile and assure him that I will be looking into this situation too. And as I'm holding his gaze in mine, I summon my very best Stepford Smile and I sweetly tell him,

“And I think the people I hire will be looking into this situation as well.”

Later, after I've fixed Rich's dinner and I'm trying to decompress, my cell phone rings and it's my contact person from Infectious Diseases. Bless her heart, like I haven't already put her through the ringer, and it's her day off and she's calling to see how we're doing. Could it be because earlier today I asked her “what do I have to do to be heard? No one is listening. I'm telling you, and visiting nurse, and anyone who will listen what is going on and NO ONE IS LISTENING. Where do I go with this? Do I have to get a lawyer just so someone will pay attention?”

Holy Shit, Batman. I used the "L" word.

I tell her what has transpired, because heaven knows, if I don't tell her, she might never find out. I apologize for any stress I caused her today. I thank her for her help and concern. She tells me I should call the hospital's patient advocacy program. I assure her I will be calling someone, but it will not be the hospital. I don't take my bucket to a dry well.

Now it's hanging out there. The “L” word. And here's the thing. One of my Personal Rules of Life—Never pull the gun unless it's loaded.

So I now have a project for Rich. Starting tomorrow I will sit him in front of the TV with a pen and pad of paper. His job is to watch every frickin' commercial that airs for malpractice attorneys. He will write down their name and phone number and he can award stars for how well he likes their commercial.

Never underestimate the Power of Pissed OFF. Do you hear me now?