Lydia hospital day 52

Yesterday Lydia lost her next-to-last piece of plastic invading her body, her PICC line. Now all that remains is her tracheostomy.

Last night a kind friend stayed with Lydia so Mom and Dad could have a dinner date together. Time alone! Thank you, Shannon.

Dad got to stay the night with Lydia. (Dad secretly admits he’s glad Lydia’s room TV carried the record-setting BYU-UNM basketball game.)

Today Lydia has looked great. She’s on the ventilator only when asleep. Since this morning she’s been breathing through an “artificial nose,” a little gizmo that provides some filtering of warmth and humidity so she can breathe with just an oxygen tank and small regulator. That makes it portable enough to ride in a little buggy thing up to a rooftop garden in the hospital, with Dad, Mom, Will, Rose, Jon, and a nurse (and a battery-powered continuous pulse oximeter). This is the first day she’s felt the breeze since January. She seemed to love it.

Lydia hospital day 50

Lydia did great overnight. Winona is staying in the hospital but got good sleep last night, ran the stairs this morning, and generally looks so lively it almost makes me tired.

I fed Lydia this morning and she ate most of her cream of wheat with strawberries, plus a little grapefruit. After almost every bite she asked for a Signing Time video. I kept telling her “OK, after breakfast. ... First you need to eat. ... I get it, you want Signing Time; first food, then video.” As breakfast went on without the video, her signs got bigger, slower and more precise, and she added “video” after a while—as if she were trying hard to be patient with a dim-witted dad.

She tolerated a hairband today (one of few times she’s done so), thanks to some distraction. I took a picture.

Medical update: During the day she is on a “trach collar,” i.e. just breathing oxygen-enriched air through the new hole in her throat. Her oxygen requirement fluctuates but at times is still as high as 50%, too high to practicably deliver at home. At night we connect her to a “laptop ventilator” (so named because of its size and approximate shape), on which she gets by fine with only a small amount of oxygen (2 L/min). The morphine and lorazepam wean continues, and she has no cough, fever, or new problems. We are waiting for Lydia’s daytime oxygen needs to taper, for equipment to be set up and delivered and for Mom and Dad to be checked out on it.

Lydia hospital day 49

Thus end 7 weeks at SLCH and Lydia's first day out of the PICU. The first night was tough—for Winona. Lydia was OK and Dad slept at home. Today went well, though.

I would like to praise Mary Hartman, M.D., one of Lydia's attending physicians who personally made a difference in Lydia's ICU care. One of many examples of her second-mile approach to patient care: she came to see Lydia on the floor last night at about 10pm, and then stayed half an hour to help take care of Lydia (and Mom) even though Lydia was no longer her responsibility. She stopped back by this morning to make sure all was well. Here is someone who is not here to punch a clock! Our heartfelt thanks were consistently met by protestations that it was her job, or that it was a privilege. Three cheers for a skilled and kind doctor who routinely goes above and beyond her duty.

Lydia hospital day 48—and out of the ICU!

Lydia is out of the intensive care unit!

The plan is for her to breathe on her own during the day and with a ventilator at night to help keep her lungs expanded. That means ordering a ventilator in case she needs it when she goes home, and it turns out that means a two-week wait. If she has recovered enough not to need it by then, fine, she can go home without it.

A shout out to nurse Aften from the ICU, who thought to add flavoring to Lydia's nasty-tasting medicines so she takes them without crying or spitting them out.

Also a very heartfelt thank you to the whole PICU staff, from the amazingly professional and kind woman who cleaned and mopped Lydia’s room to the head of the unit and everyone in between. You cared for us while you cared for Lydia, and you did it with skill and experience. You told us it was just your job, but you took extra time to make Lydia (and often us) comfortable, and you cried with joy when you saw her whole and happy again. Thank you.

Lydia hospital day 47

Her lungs are much better than before but still not healed. She appeared not to like the CPAP last night and did better just breathing oxygenated air by herself. However, her lungs are a little better aerated today. So the docs are going to mull it over and decide whether or not to keep trying CPAP at night. Otherwise she is eating regular food, has a slight action tremor, and is playing and signing when awake. They are gradually tapering her oral morphine and lorazepam. Most likely she’ll be out of the ICU in the next few days.

Pictures of Lydia

To see pictures since hospitalization, click on this sentence.

To see pictures from before her hospitalization, click on this sentence.

Here is a link to a brief video of her before her hospitalization.

And here’s one taken a week and a half after she left the ICU.

Lydia hospital day 46

One positive side of Lydia's being ill is that yesterday when I was at the ICU with her, she was willing to sit on my lap and let me cuddle her for half an hour, rather than getting down after 15 seconds in search of a new book or game.

Overall she looks great, eating, drinking, signing, playing. Still on oxygen but breathing on her own. Her lungs are still not fully expanded on her chest X-ray, so tonight they're going to try having her sleep with CPAP. If that expands her lungs better, they'll probably leave her on that for a while. If not, they'll probably just leave her breathing on her own around the clock. Either way she will probably be moving out to the floor sometime this week, and then home after that.