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.

Lydia hospital day 44

Lydia is doing great. She was off the vent for 9 hours yesterday and did fine. The plan is to see if she can stay off it all day today and overnight. She apparently pulled out her nasogastric tube last night but is eating soft foods fine anyway. She is doing her usual Lydia things like "reading" books and saying hi and asking for ice cream. Yay!

Lydia hospital day 42

She was off the vent for over 5 hours yesterday. She's been drinking some formula and nibbling at applesauce and pudding, in addition to the tube feedings. Still on about 45% oxygen, but that's not a big problem. Today we start weaning some of her oral sedatives. All good news.

Lydia hospital day 41

She was off the ventilator for 4 hours yesterday and did well with that. She is happy. Today, she read a book with me, and signed and mouthed "purple" when I asked what color part of a picture was. Today her i.v. sedatives are being stopped and she'll have another trial off the vent. Yay! She's getting better.

Lydia hospital day 40

Lydia’s still looking good today. This should be her last day on her i.v. sedative, and tomorrow is the last day for her antibiotic. Today they will see if she can breathe completely on her own for an hour or so (still with enriched oxygen). That’s an important step in getting her ready to return home.

I can’t imagine being Lydia. “Why am I here? Why can’t I talk? Who are all these people? Why do I have tubes in my nose and throat and arm? Why can’t I get out of this metal crib?” But she seems to be taking it in stride, and looks happy. Maybe understanding our tragedies isn’t as important as it’s cracked up to be.

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!