Lydia hospital day 59

Lydia has been gradually doing better. Last night she was breathing room air again, off the ventilator, for an hour. Ditto this morning. However, any exertion and her oxygenation starts to drop. When she’s asleep she goes back on the ventilator to help keep her lungs expanded. She is getting stronger. She is standing up for prolonged periods of time holding the top rail of the crib, or crawling. She is still her usual charming, winsome little self, enjoying most people, many foods, some toys, and her Signing Time videos.

The plan is still for her to come home Tuesday afternoon after an electrician does some work that morning (her new equipment uses over 16 amps) and a visit from the home health people to inspect the setup.

Last week when I was riding the elevator I saw a mom with a “PICU” name badge, and I was trying to be friendly with something like, “We were just in there. Our daughter ‘graduated’ last week.” The mom congratulated us on that but added, “Our boy’s not going to make it out. They can already tell.” Wow. I mumbled something that tried to be supportive, but I suppose there is no good answer to that. I felt totally insensitive. But it reminded me how very blessed we have been and how far she has come from 2 months ago when we weren’t sure she would make it out of the ICU.

Thank you to Klixi and Jen and Amy and probably several others I’m forgetting, for all the help this week. Belated but heartfelt thanks to the Welches—John and Rosalynde but also Elena and the younger children, for the wonderful support all through.

Lydia hospital day 55

Lydia has been doing well breathing on the ventilator at night with a modest amount of oxygen (1-2 L/min), and doing all the work of breathing herself during the day with the help of more oxygen (~40%). Yesterday Dad was supervised replacing her trach tube with a new one, and Mom, Dad, and the 3 school-age kids got trained on CPR and rescue breathing for a child with a tracheostomy. (“No, Mr. Black, the first rescue step is not to ask ‘so, how do you feel about breathing?’” ☺) This morning, for the first time in almost 8 weeks, Lydia was breathing 100% all-natural, genuine air all by herself, without help from a ventilator! She kept it up for an hour or two and now is on a trickle of supplemental oxygen. Today Lydia will be checked out on a valve that lets her talk around the tube, if she can tolerate the extra work. She is gradually getting stronger, but still she can only stand for 5-10 seconds with support before tuckering out.

Overall, all of this is very hopeful and the tentative plan is for her to come home a week from today. I think it is pretty amazing that in our ward (congregation) at church we have one RN who works on the pulmonary floor at SLCH, one RN who used to work as a home health trach/ventilator specialist, one member who grew up with a trach, and a couple of ENT docs who do tracheotomies all the time. Call it coincidence if you want.

A special thank you to Amy Parent, who has been simply amazing organizing a cadre of loving volunteers into an efficient support system!

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.

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.