Lydia before the hospital

= probably just blew her nose
= is usually reading a book (well, turning the pages or wheedling one of the older denizens of the house into reading with her)
= wears pink high-tops (she can't take them off)
= loves to answer "EHwoah" ("hello") when the phone rings
= makes friends faster than Dale Carnegie
= communicates by signing and talking (though you may not understand her speech very well)
= knows her colors!
= has red hair, but usually won't tolerate anything in it but pigtails
= has 6 doting older siblings, ages 11 to 23
= has PT, OT, and speech therapy friends
= gets a bath once or twice a day, usually because of her exuberant eating habits
= lets Dad hug her and sing her to sleep at night but the rest of the day is too busy to get hugs from Dad -- Rose or Will or Mom get more hugs in the daytime
= has Down syndrome (trisomy 21)
= if you want to know how we ended up with this cute kid, go to Dad's mormon.org profile page and scroll down to Personal Stories
= See pictures of Lydia at home by clicking on this sentence.

Lydia update #7

Dear friends,

Lydia is holding her own. She is still breathing 90% oxygen and needing a lot of ventilator support, but her heart and blood vessels are functioning normally. Her deep lung washing from the other day turned out to have influenza A. So, that helps explain the severity and provides something to treat.

FAQ #1, when will she come home?
A: she will come home when she's better, and they don't have a crystal ball, but it is safe to say that she will not be coming home for at least 2 weeks, maybe 3 or 4. Everyone is still expecting a full recovery, but they remain on guard against unexpected problems.

I am going to start putting these notes on our (previously dormant) family blog page, http://kbwb.blogspot.com/ , rather than emailing them. Feel free to forward that link to others who know Lydia but whom I've forgotten to include in this email.

We have just been so incredibly touched by all the expressions of concern and love. Thanks to everyone who is helping out or praying for us or just being there for us. Our attending physician said today, "isn't it a pity that it seems to take something like this to let us realize how many people love us?" Thank you all, and I hope I become a better friend for having this chance to notice all your kindness. Plus, it has been said so often as to seem trite, but things like this do remind us what it means to be mortal and how we don't have guarantees that tomorrow we will see someone we love today. So go hug somebody you love. :)

Kevin Black

Lydia update #6

Dear friends,

Lydia has been stable for about 24 hours now. Her blood pressures have been normal and she is off the pressors. Still needing 80% oxygen on the ventilator but looking better overall. Adenovirus was confirmed from the sample deep in her lungs yesterday, and no bacteria have been found. So we remain very hopeful.

Thanks again to everyone who is helping out or praying for us or just being there for us.

Kevin Black

Lydia update #5

Dear friends,

Lydia has been stable overnight. Her blood pressures have been normal and they have almost weaned the norepinephrine. Still needing a lot of oxygen and some pressure from the ventilator. Otherwise no news. We have come to be glad for no news. :)

Thanks again to everyone who is helping out.

Kevin Black

Lydia update #4

Dear friends,

Lydia had to get CPR tonight when her oxygen saturation and heart rate and blood pressure dropped abruptly. Within a few minutes she was back to the status quo and her labs showed no evidence of injury. Before that she had been doing well 95% of the day, improving gradually over the course of the day. All her initial bacterial cultures came back clean. Also they got some fluid from deep in her lungs (via bronchoscopy) and the initial stain from that showed no white cells or bacteria. So it still looks like a severe case of adenovirus infection of the lungs. That is supposed to be at its worst 5-ish days into the infection, and that's about where we are now. Now it is just waiting and watching a machine breathe for a sleeping Lydia while her body kills off the virus.

Thank you for all of your heartfelt expressions of kindness, for rides and dinner, and for other very thoughtful gifts. Two of my church friends were here to visit right after the code and gave me a blessing which was inspired and very comforting. Winona has been wonderful. Thanks to speakerphones, all of Lydia's siblings were able to join me and Winona in a family prayer for Lydia. The professionalism and kindness of the doctors and staff here at SLCH impresses me, and inspires me to want to do better in caring for my own patients.

Kevin Black
P.S. Most of you know Lydia, but if you haven't heard the story of how and why we decided to have her, it's on my mormon.org profile page (go to http://mormon.org/me/1MC5-eng/ and scroll down to "Personal Stories").

Lydia update #3

Dear friends,

Lydia is not doing as well as we had hoped. There is no crisis this morning but overnight she had episodic decreases in her blood oxygen levels and blood pressure requiring more aggressive ventilatory support and epinephrine / norepinephrine. Her lungs and blood vessels are not doing well, but her other organs are all working well. Apparently adenovirus can cause bad pneumonia and septic shock but they are still looking for other possible causes.

Thank you and I'll keep you updated.

Kevin Black

Lydia update #2

Dear friends,

I have realized that these updates will always come at relatively good moments. I am not going to be tweeting during a code!

So, Lydia had a respiratory event earlier this afternoon that led to a room full of white coats for 5-10 minutes and some tense moments for Dad, but it blew over quickly and she's better now. Still just waiting for her lungs to get over her viral infection. So, we're still expecting full recovery, but it will be at least next week before she's breathing on her own. Until then she is mostly just lying there asleep breathing some oxygen and waiting to heal.

So unless things turn worse unexpectedly, Winona will probably take over tonight or tomorrow morning so I can be at church and see the other kids.

Most of you will want to quit there. Thank you. Here's details for all you medical types.

About that 2pm excitement--apparently her endotrachial tube got plugged with a hunk of junk from her lungs, leading to hypoxia and bradycardia and hypotension, and a code being called. Within a minute or two the airway was cleared and all the rest had resolved. Her heart never stopped. Along the way her FiO2 was turned back up (now at 75%) and she's still on an epinephrine drip, currently with arterial pressures around 90/36. An EKG was normal. An echocardiogram showed a small to medium pericardial effusion but normal chamber size and function so the cardiologists don't think it is affecting her to any meaningful extent. Still no culture results that would suggest a bacterial pneumonia, just the positive rapid test for adenovirus.

Thank you,
Kevin Black

Lydia update #1

Dear friends,

If you haven't heard, our daughter Lydia is in the hospital. Please feel free to forward this information as you feel is appropriate.

Lydia has a viral lung infection (adenovirus). The oxygen levels in her blood were too low even with an oxygen mask, and she developed a fever and low blood pressure, so she was transferred to the intensive care unit and she is now breathing through a tube. That means she's sedated so she doesn't cough it out or pull it out. She is on antibiotics in case there's a bacterial infection too.

For all of that, she is doing OK at the moment. She hasn't had Tylenol or a fever in the past day, and her blood is staying oxygenated on 35% inhaled oxygen. The docs are still worried about why her blood pressure is on the low side, but it is not dropping, and they're watching all the right things. They'll see how she does with some liquid food today.

Mom and Dad are coping. It is difficult for both of us to be more or less useless and unable to fix anything. And, believe it or not, after over 100 child-years of experience, this is the first time one of our children has been hospitalized, so it is new and scary for us. Plus, it's the usual doctor thing, I know too many things I can worry about and too few things that are actually useful.

Charissa has been a huge help. Will, Rose and Jon have been very supportive too, and several friends have offered to help. We are very grateful for all the offers, and at present we're managing fine. The doctors and staff are competent and kind. Lydia has had a priesthood blessing and we are praying for her.

Lydia will be here at least a few days more. If there are big changes, I'll let you know.

Thank you,
Kevin Black


Kevin J. Black

Robert Jordan (pseudonym) and Brandon Sanderson, Towers of Midnight

From around Christmastime:
OK, I liked this book, and I am proud that a BYU alumnus wrote it. But I suppose it could be seen as just a wee flaw to take over 11,000 pages (and counting) to come to the climax.

David Weber, In Fury Born

From a week ago, or so:
800 pages or so, really 5 or so books, and I'd read it before. But pretty much fills the bill for escape reading.

Arthur C. Clarke, Frederik Pohl: The Last Theorem

Not surprisingly--given the authors and the title--I liked it. Enjoyable and well written.

David Stern, Star Trek®: The Children of Kings

I was not surprised that I enjoyed reading this book. I was surprised at how the plot included a mystery or two, some clever humor, decent character development, and a good touch of "show not tell."

Adam Rex, The True Meaning of Smekday

Goofy as it was, I liked it.

Boring list of books

I realized I'll never keep this up to date if I wait to have brilliant things to say about the books. Plus, why not admit to reading the junk? So as a start, mostly books I can see from here, in somewhat reverse chronological order of when I read them:

Lois McMaster Bujold, in Cryoburn now and previously read the earlier Miles Vorkosigan books

Michael Crichton, most of his books; just recently found and read The Great Train Robbery and re-read The Terminal Man and The Andromeda Strain

James Rollins, Altar of Eden

John LeCarré, Our Game -- reasonably good writing, bleak but educational

Douwe Draaisma, Disturbances of the Mind, reviewed in J Neuropsychiatry Clin Neurosci 22(4):452.

David Baldacci, True Blue

Dan Brown, The Lost Symbol (previously read the earlier related books)

Steve Berry, The Paris Vendetta; previously The Alexandria Link (interesting), and last year before June Sommer recommended Berry, The Romanov Prophecy

A set of books I read earlier this year when bored, originally bought for Winona at her request:
Anne McCaffrey, The Lady bleh, Three Women surprisingly misogynistic and definitely not recommended, The Coelura uch, Get Off the Unicorn. Previously read pretty much all the dragon books.
Mary Stewart, Touch Not the Cat meh, Thornyhold

Arthur C. Clarke and Gentry Lee, Cradle

Elizabeth Chadwick, The Marsh King's Daughter

David Weber, The War God's Own, Wind Rider's Oath, The War God's Own; In Fury Born; the Honor Harrington series

L. B. Graham, Beyond the Summerland, Bringer of Storms, Shadow in the Deep -- the first was a gift from Jon Koller (thank you!), who I believe knows the author.

C. S. Forrester, The African Queen

Ben Bova, Moonwar, Jupiter, Saturn, and most of the rest of that series

Isaac Asimov, almost all his science fiction

Orson Scott Card, works including Saints, the original Ender's Game trilogy (which includes Xenophobia, maybe the only novel truly about OCD), the series with the spaceship BoM-like weirdness, the first Alvin Maker book, and a few others.

J. K. Rowling, the Harry Potter series and the little charity add-on volumes

Robert Jordan (pseudonym), the Wheel of Time series (haven't read the most recently published one yet)

Robert Bork, Coercing Virtue: The Worldwide Rule of Judges

Ann Coulter, Treason -- Reading this, I can understand all the criticism of her.

Piers Anthony, Split Infinity, Blue Adept, Juxtaposition -- couldn't take the punishment.

Willa Cather, One of Ours and O Pioneers! -- I think One of Ours was the first book I read when I had started to write my novel and realized some of the hubris of that venture and decided to read some good writing starting with this Pulitzer Prize winner. I remember putting the book down briefly after the first couple of pages, just awed by how good she was at "show, don't tell," and at how artfully she had addressed the problem of what goes on the first page.

John A. Garrity, Quarrels That Have Shaped the Constitution -- loved it

William J. Bennett, Death of Outrage: Bill Clinton and the Assault on American Ideals -- actually I remember thinking it was very nicely argued, though I bet the author came to hate the title after people probably started using it on him :)

Another book or 2 for KJB to read

The Grand Design
by Stephen Hawking, Leonard Mlodinow
2010

Fabric of the Cosmos: Space, Time, and the Texture of Reality
by Brian Greene
2007