Sunday, December 20, 2015

what we know

What we know is a whole lot of nothing. 

They have been able to drop his blood pressure with IV meds, so he is able to talk more, sit up, and watch TV for the first time today. He smiles and talks to people who come into the room. He's hungry for the first time in days. Those are the good things.

The less good thing is that they are still looking for a needle in a haystack. 

I am sort of appalled that they don't have to explain much to me in here.  At this point I have actually spent about a a full month of the year sleeping next to someone in a hospital room. Nobody needs to explain why they give dilaudid or what nephrology does. We know why they are giving heparin and why the pressure cuffs are on his legs. We've heard the word "pheochromocytomas" so many times that even I could tell you how it's found, that it's benign, treatable, and that it's also not likely to be causing his issues right now. I'm not appalled that I've spent this much time in a hospital, I'm appalled that my dancer brain has somehow managed to soak in all of this bio-medical information.

Today has been spent meeting with interns, reviewing radiology, more ultra-sounds and titrating medication, to hopefully get some oral meds to work. Punk's godmother, and one of my favorite people in the world, stopped to see us. She's an RN in the pediatric ICU here, and came bearing snacks, stuff to color and a "brown soda with ice."

There are pages of health history to fill out, clipboards full of questions, but we get through it. It is tough to find quiet space to concentrate. Even the quiet places are filled with intense conversations, hushed telephone calls, the constant beeps of somebody's something.

His pain seems to be more manageable today, and the blood pressure is high, but stable (as long as he's laying down), and he smiles a bit more. He is still Rico. He still gets pissed when the doctor and interns congregate outside his door to talk about him. They invite me out to listen. They are not keeping anything from him, there are just so many of them, so much equipment, so many questions, there is more room in the hall.

The two most discouraging things he's heard today are:
1) He needs to cut back. He is not a cut-backer - it is part of his Rico-ness to never want to cut-back. We are still not sure what this means exactly, but we'll figure it out.
2) At this point, in the absence of any other findings, his doctor is predicting that this could very well be a case of essential malignant hypertension. Which in a nutshell means: welcome to your new normal. 

In this case, malignant does not mean "cancer" it just means that it causes some very bad things to happen to your body. The "essential" part means, it is always there - it just is.  If they are right, they can theoretically control the blood pressure with medication. But still, it sounds like juggling chainsaws.

Chainsaws that are on fire.

Chainsaws that are on fire over a pile of sleeping kittens.

What they say is: "We are keeping you safe. You will be in ICU for a couple more days at least. If we do not find a cause for this we have to control your symptoms and we are confident we can help you do that."

What it feels like is: Well, this sucks, but we're pretty sure these Flintstones vitamins will do the trick. Buy some incense and try not to stroke out.

Clearly he is in good hands, but after three months, some answers would feel pretty good.  He sends his love and really appreciates all of the good mojo you guys are sending his way.








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