Bustin' out

Lydia had a good night and will be home as soon as the red tape monsters are appeased. Yay!

RSV

Lydia definitely has RSV (a virus), but there are hints of a bacterial infection too, though that won't be clear until culture results return tomorrow.

In any case, she looks a lot better this morning after a few doses of antibiotic, and she is down from breathing 40% to 28% O2.

Still looking like discharge Thursday or Friday. I'll post updates here.

She’s baaaack!

Lydia is back at St. Louis Children’s Hospital, but we are not too worried at this point.

On that picture I posted the other day, her cheeks were flushed, she’d been tired, and she had had a runny nose. That all continued over the weekend, with a good dose of clinginess, and she stayed home from school today. But this evening she started looking worse around 5p.m. We took her in to the ER because she was not consistently keeping her oxygen saturation above 90% even on 5 liters per minute of O2 by trach collar, which is the practical maximum that we can give her at home.

She perked up some with some albuterol and Tylenol, and didn’t look too bad in the ER, on oxygen, but a chest X-ray showed an infiltrate in her right lung and probably starting on the left too. So even though it still seems likely to be a viral pneumonia, she is being admitted for i.v. (and inhaled) antibiotics, at least until cultures come back and her oxygenation perks up. Besides, we don’t say “just a virus” around here too much since our PICU adventure 2 years ago.

Lydia was a trouper in the ER tonight. She cried when her i.v. was being put in, but otherwise she was pretty stoic. And she got to show off her i.v. house to big sister Rose and say “hurt” over Skype. Winona is staying with Lydia overnight, because it is hard to separate mommy bear from her cub. I’d guess that Lydia will be in for 1 to 3 days depending on lab results, assuming there are no surprises.

Otherwise we are doing OK, and Jon and I will manage fine on our brief bachelor buddy adventure. I will try to keep this page updated with any good or bad news.

Lydia at 4+11/12

Lydia wanted to take advantage of an unseasonably warm day yesterday to write with sidewalk chalk. Dad did the writing, but Lydia could read every name, and she even helped spell some of them.

Lydia's OK, but we're at SLCH

Lydia's doing great. Winona woke up this morning to hear Lydia saying "trach ties off." She had taken them off and pulled her trach out. But she was comfortable and didn't want it back in. When we finally said it was time to put it back in, it wouldn't go in. We called the ENT resident on call, who said to come to the ER ... where she still looked great and is at 99% O2 sat. Long story short, they're going to leave the trach out and watch her O2sats overnight in the hospital. The main concern is whether granulation tissue from the trach, plus Down syndrome, will cause enough obstructive sleep apnea that it can't be managed without the trach or further intervention.

Another day

Lydia looks great but the docs want to keep her one more night to make sure she will be OK at home. She's getting tired of being here, though.

Doing better

Lydia got here to SLCH at just the right time yesterday. She got her first doses of Tylenol and an i.v. antibiotic in the ER, but by the time she got to the PICU, her temperature was 40.3 (= 104.54 F), and she was having a tough time breathing. That didn't last long -- hooray for ibuprofen -- but she needed a ventilator. The trach made that easier. After 4 or 5 hours she was already off the vent, and by last night she looked like her usual self, plus a few tubes. Today she was transferred out to dear old 7 East, and was switched to oral and inhaled antibiotics. She tolerated room air part of the day. She fell asleep a short while ago during Dad hug-and-sing time, and looks comfortable on some O₂. We'll see how the night goes, but the expectation is that Lydia will go home tomorrow. With the worst danger apparently past, Winona was finally ready to tag with me and try for a night's sleep at home. Thanks to everyone who has been so thoughtful and loving, especially anyone I forgot below. Tom: thanks for being there and being prepared. SLCH doctors and staff: thank you again for your expert care! Jon & Rose: thanks for the help finding & printing the references for my talk while I drove home from the ER. All the presidency: thanks for your genuine concern, and for covering stuff for me. Steve & Cara: thanks for the friendship & time & ride. Tanya: I finally got some of the soup, and it was great. Thanks! Choir: thanks for dinner. Winona: thanks for being you, sweetheart! and for helping me attend conference.

Back in

Lydia's in the SLCH ER; plan is for her to go up to the PICU. Probably H. flu pneumonia. She's already had a dose of antibiotic, and we'll see but likely she'll start improving soon. She's also had a priesthood blessing.

Winona wants to stay with her today. Kids at home are OK.

P.s. before this week, she's been fine, with no vent, no lung or heart meds, & no oxygen for the past month.

Lydia update

Lydia’s been doing well overall. She is off oxygen about 90% of the time, she has tolerated walking and climbing stairs better, and she is sleeping better at night. Tonight she has a sleep study at Children’s, I think mainly to figure out if her episodes of shallow breathing and slowed heart rate during the night are important.

Yesterday we left her in her crib alone for a few minutes and she pulled out her trach tube and threw it out of the crib. Fortunately I heard her distress from where I was sitting about 15 feet away, and we had her breathing with a good airway within maybe a minute of when she started turning blue. We got to tell the 911 dispatcher that she was OK after all, so no ambulance this time, but now we are skittish about her ever leaving our direct line of sight when she’s awake. Sigh. This is way too much adrenaline.

Oh, and to correct my last post, I forgot to count her albuterol inhaler, so really she takes 3 meds. Still, that’s way better than when she was in the hospital.

Lydia's getting better

After the hair-raising experience described in that last post, I figure I'd better report on progress. Lydia is improving gradually and during the day she is more or less back to her usual self: playful, eager, loving, and at times mischievous.

She is down to only one medication, plus the thyroid supplementation she had been on before her pneumonia. But at night she is still on a ventilator. It drives us crazy with alarm messages that often are spurious but which, especially after last Tuesday, we can't ignore.

A brief reverse

By the time the ambulance arrived, Lydia had started breathing and was pink again.

(How’s that for an opening line?)

We had way too much excitement night before last, but all is well again. Around 12:30 a.m. early Tuesday morning, apparently something obstructed Lydia’s airway and suctioning did not clear it. Her oxygen saturation kept dropping and she became unconscious and stopped breathing. Breathing for her with an Ambu bag wasn’t expanding her chest, and we ended up doing an emergency trach change on the floor of her bedroom. After a minute or so of “bagging” her through the new trach tube, she started breathing on her own again and her oxygen saturation was back to normal. That’s when the EMTs came in. Winona rode up to the ER with Lydia, and I followed in the car. (Webster Groves’s finest stopped me for going 41 in a 30, but they let me go.)

Lydia stayed the morning and afternoon back on the 7 East ward at SLCH. She hadn’t been in her room for 30 seconds—she was still being connected to the wall oxygen—when she signed to one of the nurses who knew her, “Signing Time.” “Only Lydia,” the nurse laughed, and explained that she would need to wait to watch her favorite DVD. Two Little Hands Productions would love a video clip of that scene for promotional purposes.

Anyway, she stayed the morning and afternoon with no more excitement, and is back at home.

The worst of it was that two separate people in the hospital said something about how we had done well considering “this was your first time.”

We really don’t ever want a second time.

Life at home

So. Are you considering a career change? Want long hours, low pay? Want to work with various bodily secretions? A career in 24x7 home nursing may be in your future!

Lydia, and her pulse oximeter and portable suction machine and an emergency kit and a small oxygen bottle, came home Tuesday as reported previously on this site. That night we had a couple of mysterious (fortunately very brief, as in <30 seconds) episodes of dramatic oxygen desaturation right after we hooked her up to the ventilator for the night. During these episodes the anxiety level in the home was very high as two people with graduate degrees, plus Charissa, who's in grad school, tried to urgently troubleshoot a home ventilator that had supposedly just been put together and checked out by the home health people earlier that night. (The air was not flowing due to a connection that had not been connected.) Then around oh-dark-thirty after numerous alarms, Winona talked to the helpful on-call nurse and the home health equipment on-call people and learned all about the effects on alarm sensors of condensed water in the air hoses. The next morning Lydia was needing 3-4 L/min of O₂ rather than the 0.5-2 L/min she’d needed in the hospital, she looked somewhat lethargic, and her temperature was 101°F.

But long story short, by that evening, and perhaps thanks to a dose of Cipro called in by her pulmonary nurse practitioner, she was back to her usual self and has been fine ever since. At the moment I'm sitting beside Lydia’s crib because Winona needs a break, and Lydia’s asleep breathing 0.5 L/min O₂ on the ventilator with 99-100% oxygen saturation. All has been fairly uneventful since Tuesday night. Well, except for the EPA Superfund diaper clean-up yesterday morning—nothing out of the ordinary. (Thank you, Winona, for turning down my halfhearted offer to take care of it!) We are kind of sort of back to normal around here, except for jumping up in the night if anything beeps for more than 2 or 3 seconds. And needing to take a small caravan if we want to take Lydia anywhere. And suctioning yucky stuff from her trachea.

Lydia hospital day 62 ... Homecoming!

Hooray! We have worked with the hospital team, the ventilator nurse practitioner, our home pediatrician, the home health agency, an electrician, cardiology, pulmonology, the pharmacy, audiology, and some family-members-turned-stevedores to rearrange Lydia’s room. We have an oxygen tank, tubing, a portable pulse oximeter, a heat and moisture exchanger (“artificial nose”), an emergency kit, portable suction, and lots of disposable stuff. The final inspection of our house and final training session on the new equipment began about an hour ago. We are scheduled to bust Lydia out of SLCH at 2p.m. today.

To celebrate, she rejected her grapes and even her pancake, fussed over her chest PT treatment, spit out her Ativan twice, refused her pants, socks and shoes, and interfered with her blood pressure measurement. But she ate her scrambled eggs and took her other meds. Hey, she’s 3 now, so I suppose she’s acting like a typical 2-year-old.

We can’t wait to see her safely installed at home. Most of her new medications from the hospital will be stopped by mid-April, and by the end of May we will have a good idea of how completely her lungs have healed and how long we can expect her to need supplementary oxygen.

Thank you again to all of you who have prayed for us or helped us in one way or another. Hooray!

Lydia hospital day 60

Dear Old Dad only got about 3 minutes with Lydia today, but Winona spent most of the day with her and the kids (well, the kids that aren’t at college) all had a couple of hours with her. (Unrelated comment: Ariana had her final interview for full-time missionary service today and the week after next she will probably receive her call.)

Starting at 2 a.m. this morning she was breathing room air on the ventilator. They cut back on her albuterol dosing so she doesn't need to get it at night and gets less during the day. During the day she had her “talker” on (Passey-Muir valve) so she could talk. She went to the rooftop garden and liked swinging on the glider thingy for a while.

We are getting excited about getting Lydia—and her train—back at home with us. Traveling, even around the block, will now become a real production. . . . Until her lungs finish healing, anyway.

Lydia video #2

This morning at the hospital, Charissa took a video of Lydia, Rose and herself, singing one of Lydia’s favorite songs while Lydia signs some of the words. (Vertigo warning: handheld camera with frequent, sudden direction changes.)

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.