Saturday, January 29, 2011
Lydia update #13a
She's getting a chest tube. She has a pleural effusion on the left. That's when fluid collects around the lung. So they put in a tube to suck it out and keep it out. It lets the lung expand more, and it drains one more place that bacteria could grow. Still requiring a lot of O2.
Lydia update #13
Lydia is not really improving much yet, but everyone still expects that barring complications her pneumonitis will start to improve soon.
There is more discussion of pulmonary hypertension as a contributor. A repeat ultrasound yesterday showed good pumping of the heart, but a dilated right heart, suggesting resistance to pumping blood into the lungs. At that moment the blood was all going in the correct direction, but at moments of increased pressure in the pulmonary arteries, the small hole between her left and right atria (PFO) may dump some blue blood into the red blood going to the body, thus rapidly depleting the oxygen supply to her body. They don’t know whether or not this illness will leave her with residual right heart dysfunction.
Blah blah blah. To Mom and Dad, it just means she is just not better yet ... even though we both went home to sleep last night and waited a whole 12 hours before coming back to check again! :) Waiting is just hard ... probably for some of us more than others. I think of Qui-Gon Jinn in the Star Wars I movie, who during the duel that killed him is briefly separated from Darth Maul by some red force field thingy. So what does he do? He takes a knee and meditates or reconnects with the Force or whatever. Aaahh! When action is impossible, rest is prudent, but it is so far from the natural impulse to rant, to pace, or at least to just stand there frustrated. I wish I were better at this. A little closer to my usual culture, an aria from Mendelssohn’s Elijah exhorts: “O rest in the Lord; wait patiently on Him” (from Psalm 37:7). So we sit here waiting for the team to discuss Lydia’s care on their morning rounds. “Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks; waiting patiently on the Lord.”
Kevin Black
There is more discussion of pulmonary hypertension as a contributor. A repeat ultrasound yesterday showed good pumping of the heart, but a dilated right heart, suggesting resistance to pumping blood into the lungs. At that moment the blood was all going in the correct direction, but at moments of increased pressure in the pulmonary arteries, the small hole between her left and right atria (PFO) may dump some blue blood into the red blood going to the body, thus rapidly depleting the oxygen supply to her body. They don’t know whether or not this illness will leave her with residual right heart dysfunction.
Blah blah blah. To Mom and Dad, it just means she is just not better yet ... even though we both went home to sleep last night and waited a whole 12 hours before coming back to check again! :) Waiting is just hard ... probably for some of us more than others. I think of Qui-Gon Jinn in the Star Wars I movie, who during the duel that killed him is briefly separated from Darth Maul by some red force field thingy. So what does he do? He takes a knee and meditates or reconnects with the Force or whatever. Aaahh! When action is impossible, rest is prudent, but it is so far from the natural impulse to rant, to pace, or at least to just stand there frustrated. I wish I were better at this. A little closer to my usual culture, an aria from Mendelssohn’s Elijah exhorts: “O rest in the Lord; wait patiently on Him” (from Psalm 37:7). So we sit here waiting for the team to discuss Lydia’s care on their morning rounds. “Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks; waiting patiently on the Lord.”
Kevin Black
Friday, January 28, 2011
Lydia update #12
A scary moment, doing OK.
Her breathing tube got kinked for about 15 seconds during chest therapy. That was fixed quickly enough, but it seemed to set off a spell lasting about an hour during which her blood oxygen gradually dropped (O2sat nadir <80%), even on 100% inspired O2. Had lots of docs in and out and around the room thinking and watching and trying different diagnostic and therapeutic maneuvers. She had a repeat echocardiogram; initial look shows evidence of continued pulmonary hypertension despite the inhaled nitric oxide; and her pericardial effusion remains small; otherwise no real news.
She's OK now but still on 100% oxygen. This episode brings home the point that she is not out of the woods yet.
Thanks for your help, words, thoughts and prayers.
Kevin
Her breathing tube got kinked for about 15 seconds during chest therapy. That was fixed quickly enough, but it seemed to set off a spell lasting about an hour during which her blood oxygen gradually dropped (O2sat nadir <80%), even on 100% inspired O2. Had lots of docs in and out and around the room thinking and watching and trying different diagnostic and therapeutic maneuvers. She had a repeat echocardiogram; initial look shows evidence of continued pulmonary hypertension despite the inhaled nitric oxide; and her pericardial effusion remains small; otherwise no real news.
She's OK now but still on 100% oxygen. This episode brings home the point that she is not out of the woods yet.
Thanks for your help, words, thoughts and prayers.
Kevin
Lydia before the hospital—with pictures
= 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 to her)
= wears pink high-tops (their virtue is that 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
= turns 3 soon
= 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.
= is usually reading a book (well, turning the pages or wheedling one of the older denizens of the house into reading to her)
= wears pink high-tops (their virtue is that 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
= turns 3 soon
= 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 #11
Lydia had an uneventful past 24 hours. She is breathing 45% oxygen on the ventilator. Yesterday her weight was 4.1kg higher than at admission. A gallon of milk weighs less than that. She was a little puffball. But it's all water weight. :) Today she was down 1.4kg, so she's starting to get rid of that extra fluid. Food! Today she gets food.
No one is in a hurry to make things happen suddenly any more, so today's plan is food, decreased frequency of blood draws, and slow adjustments in her inspired oxygen concentration and ventilator settings as tolerated. Possibly over the weekend she will be well enough to let her start moving again.
Kevin
No one is in a hurry to make things happen suddenly any more, so today's plan is food, decreased frequency of blood draws, and slow adjustments in her inspired oxygen concentration and ventilator settings as tolerated. Possibly over the weekend she will be well enough to let her start moving again.
Kevin
Thursday, January 27, 2011
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'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
Wednesday, January 26, 2011
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
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
Tuesday, January 25, 2011
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
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 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.
= 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 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
Monday, January 24, 2011
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 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 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
Sunday, January 23, 2011
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 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 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
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