Lydia update #10

So, minor setback, same plan overall.

Lydia's oxygen levels dropped in the night and her feet were getting cold and pale. After a lot of attention overnight, the upshot is that at present she is doing fine (including her feet), with more oxygen and ventilator help and drugs than yesterday but less than the day before. The plan is to resume tube feeding, keep her paralyzed overnight, and again gradually wean the oxygen and ventilatory support.

Many people have called or emailed or otherwise expressed support--even people I didn't know would care. One of my colleagues, a doctor at Children's, stopped to see how Lydia was doing, and I had to tell him I didn't even remember where I knew him from. All this support has been a real comfort. Thank you!

Kevin Black

P.S. A friend was asking us a few weeks ago about how it could make sense for God to answer prayers from friends and family. (He meant, why would two prayers be better than one?) I have thoughts on that, and I believe in prayer, but I'll admit I don't understand it all theologically. Nevertheless, Winona and I are very grateful for the people all over the country who are praying for Lydia. Thank you.
KJB

Lydia update #9

Lydia is improving gradually. Her oxygen and ventilator settings are lower today than yesterday (that's good), and they are gradually weaning her off. For a couple of days she's been on a medicine to keep her from moving, since she was so sensitive to anything the nurses needed to do, but they're stopping that now. That will make it easier to tell how much sedation she needs. Today she is getting a transfusion (since lots of her blood has been sent to the hospital lab). That will help get her oxygen where it needs to go, and it will help keep the water in her blood vessels.

In that light it is interesting that last night when I got home (Winona stayed the night), I read an interesting short article in my college alumni magazine in which a cancer survivor points out that a blood donation represents a selfless sacrifice on someone's part--a donor who will always be anonymous to the recipient. It makes me realize that the people we have noticed being so generous to Lydia and us are only the visible few of many. I noticed the kindness of the two volunteers who stopped by this morning to offer Dad gum or a magazine or coffee or playing cards, but there have been invisible helpers too: blood donors, but also people who gave money to the hospital, or helped one of the doctors or nurses through school, or volunteered for a clinical trial for one of the medicines she's received. There are probably many others I haven't even thought of.

So thank you, whoever you are. The random seed of kindness you sowed has grown into a life-saving gift to Lydia.

Kevin Black

Lydia update #8

Nothing but good news today for Lydia.

Her official (2nd) cardiac echo came back. The pericardial effusion had not grown. Cardiac function was good. The right atrium and ventricle were somewhat enlarged (new, not longstanding), her pressure in her pulmonary veins was a little high, and she was still needing 90% O2. So the docs figured this meant her blood vessels in her lung were too tight, and they started her breathing a touch of nitric oxide (NO). Within minutes her venous pressure was down, her lung sounds cleared up substantially, her O2 is already down to 55%, and they are turning down the PEEP. Also, she is already a lot less puffier.

No fevers, the blood pressure is holding up, no new problems.

I am so grateful for smart docs and skilled nurses and cool science.

Kevin

What is WALEO?

When our oldest child Charissa was about 3 years old, Eric Carter had just given me a copy of the Seven Habits book, and Winona and I were writing a family motto. Charissa added the line, "We all love each other!" The first letters of that sentence spell WALEO, and she loved saying "WALEO!" We still recite the family motto every week in our family night.

Black family motto
I am an important part of the Black family.

I can be proud of my family and ancestors.

We are brothers and sisters, so we are kind to each other in word and deed.

We all love each other.

We want to always stay together, so we read the scriptures, we listen to the prophet, and we will do what they say.

We will "seek learning, even by study and also by faith."

We value beauty.

We will share our blessings by serving others.

___________

DC 88:118, Jacob 2:17, DC 108:7, Hymn 219 (Grace Noll Crowell and Phillip Landrage, "Because I Have Been Given Much"), DC 88:133, DC 136:28

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.