Lydia hospital day 39

Another good day. Signing, recognizing us, asking for the phone, helping get ready for bed. She needed 55% O₂ last night, but is at 45% now. Still tapering her sedatives— all the i.v. meds should be gone by Tuesday. Also we got the first statement from SLCH and are very grateful for insurance.

Lydia hospital day 38

This is an odd sensation. I’m in Lydia’s room but I am calm.

She is asleep, so I don’t need to protect and entertain her, and she has been getting better, so there is less to worry about. Last night Jon and Rose got to visit—Lydia was getting sleepy and was signing less often, but was still interacting mostly like her usual self. Overnight she slept 8 hours, woke up and played for a while, and went back to sleep before I got here at 8a.m. No crises, no fevers, no sign of withdrawal, no extra or new medications. I'm looking forward to seeing her again today.

Today’s plan is to continue tapering her last i.v. sedative. It should be gone by Tuesday. Tomorrow they plan to change her ventilator to a mode that provides even less of the work of breathing ... or see if she can do without it altogether.

hospital day 37: she's 3 and ... sheee's baaaaaack!

Lydia is celebrating her 3rd birthday with a princess tiara, balloons, a bunch of presents, and communicating! She's sitting up and I've seen her sign and/or mouth all of these words at least once:
  ice cream, milk, Mom, book, Signing Time, cat, dog, fish, Dad.

PEEP still down to 5, FiO2 50%, now in "pressure support C/PAP" mode.

So, hooray! Still getting better.

Lydia hospital day 36

Sorry, faithful reader, for skipping a day.

Yesterday afternoon Winona called me to say "Lydia is back!" Lydia had signed "book" and "want" and then turned pages in a book (one of her favorite activities), and generally had played with Winona all afternoon. I came over and of course Lydia ignored me and just sat there. I'm not skeptical any longer, but I'm jealous that I missed it.

This morning I was with Lydia for almost 2 hours and she was sitting up most of the time, mostly ignoring Dad, ignoring books (one of her two favorite activities before hospitalization), and trying somewhat successfully to get her straight-arm soft casts off (they prevent her from pulling on tubes that shouldn't be pulled on). She looked excited when I turned on a Signing Time video (her other favorite activity). So, she's not back yet, but she's making progress.

Lydia is off her diuretic, she is off the Versed (an i.v. Valium-like sedative), and her ventilator is down to 40% FiO2 and a PEEP of 5. Speech therapy will assess her today to see if she can safely eat or drink. Constipation has still been an issue but is improving. Her only remaining i.v. sedative is Dilaudid, down to about 2/3 of last week's dose. She is still getting morphine and lorazepam by tube (she can drink those when the feeding tube is out). We should see by this evening how much difference this morning's decrement in her Dilaudid dose has made.

Lydia hospital day 34

Today Mom saw Lydia sign "more" after hearing a verse of "the wheels on the bus," and she made a "shh" sign at the appropriate place. Dad is alternating between jealousy and skepticism, since he was not there to see it. When I was there, her eyes were open but she was not especially tuned in.

The plan is still to gradually taper Lydia's sedatives and ventilator support.

Lydia hospital day 33

Yesterday and today were largely the same. She is initiating every breath, she's off the NO, and ventilator settings are down to a PEEP of 8, FiO2 50%. She is on antibiotics for fever, with bacteria and white cells on her trach tube. The current issue is gradually weaning her sedation (opioids and benzodiazepines) down from their high levels from the past few weeks. Until that is done, it is impossible to know what to make of the fact that her brain is not really working right (she's acting more like a 3-month-old than like an 18- or 20-month-old). So, until she can tell that Mom or Dad is here, or can miss us, we're here for rounds, and we check in 2 to 3 times a day, but otherwise we leave Lydia with the expert care here and try to take care of the other kids, or each other, or the rest of life. And try not to worry.

We are so amazed at the continued kindness that so many people are showing us. Thank you!

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.

Lydia hospital day 30

Ditto.

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!

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.

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.

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. :)

Lydia hospital day 25

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

Lydia hospital day 24

The good news is, no big news overnight. The plan today is to see if Lydia can be more alert without being agitated. So, slow weaning of sedatives. She's on pentobarbital now, so we've moved up from, what, early 1800s (chloral hydrate) to early 1900s in anesthetic choice. Or something like that.