Saturday, February 19, 2011

Lydia hospital day 31

I have been thinking about expectations and oxygen. (Yes, this means there is little real news to report and that Dad is just sitting there worrying.) Lungs are better, she's initiating each breath, nitric oxide is almost off, she's getting her food through her stomach, and her eyes are open. Thursday Lydia had a withdrawal seizure but has looked pretty comfortable most of the time since then. Once she's off the NO and her ventilator is doing less (namely, PEEP is down to 4), she may be able to move out of the ICU.

Sam Guze told us once during my residency training that when a doctor is frustrated with a patient, it is usually because the patient and the doctor don't have the same expectations. I've been frustrated. I was expecting that Thursday we would get to talk to Lydia again, and that it would matter to her that we were there. But even though her eyes have been open much of the time since then, there have been only 2 or 3 brief moments when she's responded specifically to us. This really should not have been such a surprise, I suppose, because she is still on astronomical doses of sedatives (opioids and benzodiazepines), and between the landmarks of "comatose" and "awake" there is still a vast landscape of "intoxicated". So, the docs are not surprised, and in fact they think it is a little humorous that Dad looked stoic when Lydia kept almost dying, but now that she is so much better I'm all worried. Back then the question was life or death; I realized I had zero power and not much more useful knowledge. Now the question is about how well her brain will work when she gets off all the drugs, and I've dealt with lots and lots of delirium and intoxication and withdrawal. So I am trying to be patient. It is not working very well. :)

Unrelated topic. One of our kids posted a note in the bathroom that says that our bodies have more oxygen (by weight) than any other atom. (Yes, I do live in a house like that.) We all know oxygen is necessary: without it our lifespan is measured in seconds to minutes. But it is the same stuff that causes rust and fires . . . and lung damage. It's possible the oxygen that kept Lydia alive has also damaged her lungs. (This idea that good stuff can be bad shouldn't be surprising--we all need water, but don't mention that to a drowning man.) This is why I think all kinds of medical treatments need careful toxicity studies, even if they are "natural" treatments. Digitalis and lithium are natural too, not to mention arsenic.

Friday, February 18, 2011

Thursday, February 17, 2011

Lydia hospital day 29

Lydia is still withdrawing from her sedation, and keeping her awake but comfortable is difficult. But her lungs and heart are working pretty well, she's breathing on her own, she's off antibiotics, and she has no central lines. This afternoon she smiled at Mom, so Mom is pretty happy!

Wednesday, February 16, 2011

Lydia hospital day 28, update

Winona held Lydia in her arms most of the day. I called the PICU nurse just now and Lydia is down to breathing 40% oxygen, is off the milrinone, and looks pretty comfortable though mostly awake. She is getting some of her sedation by nasogastric tube now, rather than all i.v. So, this is more good news. Can't wait to see her tomorrow!

Lydia hospital day 28

It's hard to please Dad. Yesterday I was freaked out because they were so slow waking her up, and today I'm looking at her action tremor and hypertension and thinking that suddenly dropping her daily Versed dose by 28mg might have been a little precipitous.

But the exciting thing is, she is tracking with her eyes, she signed "music" when the music therapist walked in and started strumming her guitar, and Mom was ecstatic when Lydia mouthed "ma ma"! So her 3 anesthetics are gradually being tapered, and we are gradually being excited to gradually see our little Lydia again.

Oxygenation is good breathing 60% O2, her nitric oxide is being tapered, and no fevers overnight, so it's all going the right direction at the moment.

Tuesday, February 15, 2011

Lydia hospital day 27

So, there was considerable cogitation yesterday about how to best and most safely wean her sedation. Intensivist, Pharm.D., and even Dad gave opinions. Anyway, they temporized overnight and today they are turning off the pentobarbital. She's only been on it for 5 days so there should not be much withdrawal. We should get to "see" her today. I mean, we've seen her body every day, but we haven't communicated with her for almost a month.

Monday, February 14, 2011

Lydia hospital day 26

This is officially start-to-wake-up-Lydia day! She is still breathing 70% O2, but her trach is thought to be stable enough, and her vital signs are ok. Now we have to get from more or less comatose through drunk-like and groggy to awake but calm. So we are excited, but as every parent knows, there is a certain risk to a child's waking up. :)

Sunday, February 13, 2011

Lydia hospital day 25

She's doing ok. Still on the ventilator, a little more awake. No big bad news.