Status quo. Since last night she's had a lot more sedation and has been asleep or groggy most of the day. Lung function is stable at this point, with high O2 levels in blood on about 55% inspired O2, and modest ventilator support (e.g. PEEP=10). At this point it is a challenge to find a level of sedation that leaves her reasonably calm and comfortable without bradycardia (HR 48-60), depressed respiratory drive, and marked constipation. The plan is to see if those problems can be fixed enough that by Monday she is able to breathe on her own.
It occurred to me this morning, after watching this case study of sedative benefits versus side effects, that letting you breathe means allowing the possibility that you can cry. A good sermon probably lurks somewhere in that observation.
Saturday, February 5, 2011
Friday, February 4, 2011
Lydia hospital day 16
Slow progress, I guess. Yesterday and today, she has been awake and miserable part of the time—apparently just scared and not understanding what’s up. On the good side, she’s traded her internal jugular catheter for a PICC line (inserted in an arm vein), and her oxygenation has been good on 55% inspired oxygen . . . not to mention the continued heartbeat, which we shouldn’t take for granted. Thank you for all the help and thoughts and prayers. It is hard to see your child sick and be powerless to help.
Thursday, February 3, 2011
Lydia hospital day 15
Well, things are looking a little better this morning. Lydia has lost a chest tube and a urinary catheter, so now she’s down to 4 pieces of plastic entering her body. Her NO and O2 requirements are lower, she’s initiating some of her breaths herself, and she was awake, if groggy, for much of the morning. The plan is to gradually reduce her oxygen and change her ventilator settings until she is at a point that she can switch to a mask instead of a breathing tube. Optimistically that might happen Monday. She had a fever last night but not today. She can’t talk with the tube, and her wrists are restrained to keep her from pulling out important things, but she can sign “milk” and she was upset this morning when no one would give her milk. She is getting adequate nutrition but none of the enjoyment of eating. Winona showed her some family pictures earlier, and she looked excited and tried to say “Ahh” when she saw the picture of herself with Ariana. At this moment she is sleeping.
So, this is all exciting. (Unless you know too many things that could still go wrong. Then it is still exciting, but you don’t dare exhale yet.)
So, this is all exciting. (Unless you know too many things that could still go wrong. Then it is still exciting, but you don’t dare exhale yet.)
Wednesday, February 2, 2011
Lydia hospital day 14
It is hard to look for good news when your kid is still tied down breathing on a ventilator. But here goes. The good news is, she is still off the paralytic and pressor drugs, her pleural effusion seems mostly to have dried up, she is tolerating the tube feeding, and the antibiotics are being stopped. She is taking some breaths spontaneously. Her markedly slow heart rate from yesterday suddenly doubled this morning. No one is quite sure why either happened, but they are taking care of all the appropriate possibilities.
On the other hand, she still has occasional spells of low oxygen in the blood, that respond only partially to more oxygen, and sometimes when she wakes up for a minute she looks very sad. Of course she has no clue what is happening, and with the et tube and restraints, she can’t talk or sign. I can only imagine how scary and frustrating it must be for her, during the brief moments when she is conscious. So for now she spends almost all day out of it, on morphine and “son of Valium.”
Blah blah again. Intellectualization only goes so far. It is very hard seeing her uncomfortable and knowing that some of the things that are making her uncomfortable are keeping her alive. When she looks up and sees my face or Mom’s, does that comfort her, or does she think we are complicit in her misery? I was wondering this morning if we seem that way to our Heavenly Father sometimes: entirely ignorant of what is going on around us and why, sometimes hating the very things we need most, and sometimes even blaming the caregiver for our discomfort.
It is very interesting (though not enjoyable) to watch medical care from the other side of the stethoscope. I’ve done that a few times now since med school, and I am still amazed at how each time it reveals things about medical care that I want to avoid or emulate in my own practice. Many of the best things I’ve seen are summed up in this famous quote: “the secret of the care of the patient is in caring for the patient”. It isn’t sufficient—in fact I think I’d prefer obnoxious competence to pleasant incompetence in my doctors—but I think it is necessary. A lot of smart and caring people are taking care of Lydia. Most of them are both. We are grateful to them all.
On the other hand, she still has occasional spells of low oxygen in the blood, that respond only partially to more oxygen, and sometimes when she wakes up for a minute she looks very sad. Of course she has no clue what is happening, and with the et tube and restraints, she can’t talk or sign. I can only imagine how scary and frustrating it must be for her, during the brief moments when she is conscious. So for now she spends almost all day out of it, on morphine and “son of Valium.”
Blah blah again. Intellectualization only goes so far. It is very hard seeing her uncomfortable and knowing that some of the things that are making her uncomfortable are keeping her alive. When she looks up and sees my face or Mom’s, does that comfort her, or does she think we are complicit in her misery? I was wondering this morning if we seem that way to our Heavenly Father sometimes: entirely ignorant of what is going on around us and why, sometimes hating the very things we need most, and sometimes even blaming the caregiver for our discomfort.
It is very interesting (though not enjoyable) to watch medical care from the other side of the stethoscope. I’ve done that a few times now since med school, and I am still amazed at how each time it reveals things about medical care that I want to avoid or emulate in my own practice. Many of the best things I’ve seen are summed up in this famous quote: “the secret of the care of the patient is in caring for the patient”. It isn’t sufficient—in fact I think I’d prefer obnoxious competence to pleasant incompetence in my doctors—but I think it is necessary. A lot of smart and caring people are taking care of Lydia. Most of them are both. We are grateful to them all.
Tuesday, February 1, 2011
Lydia hospital day 13
Chest X-ray looks good again this morning. That is very cool. Last night she had another spell of low oxygen in the blood when they were trying to suction out her breathing tube, but otherwise she's tolerated being un-paralyzed. She's getting a trickle of tube feeding. Lydia's heart rate is very low, but it doesn't seem to be bothering her blood pressure, so the docs are just watching it and expecting it to improve once the back-pressure on her right heart is lower and they turn down the sedatives.
The plan today is to gradually turn down her inspired oxygen concentration, as tolerated, and tomorrow wean her off the nitric oxide. The hope is she will tolerate that because they recently started her sildenafil, which affects the body's own use of nitric oxide. Those of you who don't know what sildenafil's more common use is and want a chuckle can click here.
Winona is so very excited to see her baby with her eyes (briefly) open! At this moment she's reading Lydia a book that her friend Corinne brought her. I doubt I'll be able to pry Winona away from here for the next week or two. The kids at home are excited for a day off school, excited to check their 72-hour emergency kits, excited to hang out together at home, and of course excited to hear that Lydia can open her eyes and wiggle.
The plan today is to gradually turn down her inspired oxygen concentration, as tolerated, and tomorrow wean her off the nitric oxide. The hope is she will tolerate that because they recently started her sildenafil, which affects the body's own use of nitric oxide. Those of you who don't know what sildenafil's more common use is and want a chuckle can click here.
Winona is so very excited to see her baby with her eyes (briefly) open! At this moment she's reading Lydia a book that her friend Corinne brought her. I doubt I'll be able to pry Winona away from here for the next week or two. The kids at home are excited for a day off school, excited to check their 72-hour emergency kits, excited to hang out together at home, and of course excited to hear that Lydia can open her eyes and wiggle.
Monday, January 31, 2011
Lydia hospital day 12, note 2
Some good news. Lydia has sustained good oxygenation since the paralytic agent was discontinued this morning. This has allowed them to start cutting back on the ventilator settings a little. She’s opened her eyes briefly a few times in response to noise or a touch. That is pretty exciting. She still looks pretty out of it when she opens her eyes; that’s not a a surprise, with all that sedation. She also had a bowel movement, so the tube feeding rate is being turned back up. (I don’t think I ever expected to be so excited about a dirty diaper.) So we hope this is the start of improvement.
I am continually amazed by how much support Lydia and our family have received. Yesterday at church, many people talked to us and offered to help. While Charissa and I sat with Lydia last evening, we listened to a CD a friend had brought by. A teenager from church baked a peach pie with a pastry “L” for Lydia on top. Today when Winona and I got to the hospital, we met two of our MD friends who had dropped by to see how she was doing. While we were waiting for the team to round, I ate some cookies a friend had dropped off and drank a root beer from another friend. Later Ariana texted me from college to say that her roommates were fasting for Lydia—and she had not even mentioned anything to them about our congregation’s fast. When I got back to her room after trying to work today, I found a gift bag from Lydia’s speech therapy class with things she will like when she is awake. I’m sure I haven’t remembered all of you. It just overwhelms me—in a good way. I want to remember this generosity for years to come. It inspires me at least to want to be more generous. Hopefully I can actually become more generous (“both almost, and altogether”). Thank you again to all of you!
Kevin
I am continually amazed by how much support Lydia and our family have received. Yesterday at church, many people talked to us and offered to help. While Charissa and I sat with Lydia last evening, we listened to a CD a friend had brought by. A teenager from church baked a peach pie with a pastry “L” for Lydia on top. Today when Winona and I got to the hospital, we met two of our MD friends who had dropped by to see how she was doing. While we were waiting for the team to round, I ate some cookies a friend had dropped off and drank a root beer from another friend. Later Ariana texted me from college to say that her roommates were fasting for Lydia—and she had not even mentioned anything to them about our congregation’s fast. When I got back to her room after trying to work today, I found a gift bag from Lydia’s speech therapy class with things she will like when she is awake. I’m sure I haven’t remembered all of you. It just overwhelms me—in a good way. I want to remember this generosity for years to come. It inspires me at least to want to be more generous. Hopefully I can actually become more generous (“both almost, and altogether”). Thank you again to all of you!
Kevin
Lydia update #15
The good news is, her chest X-ray looks pretty much back to normal today. Well, if you don't count the chest tube. The bad news—if you need more bad news beyond still being in the ICU on a ventilator—is that last night she had another spell of low oxygen saturation (<80%), apparently lasting almost an hour. Makes me second-guess my decision to sleep at home the last couple of nights. Of course, if I'd been here I couldn't have done anything. Also, her GI tract isn't moving much and a slow feeding rate of 25mL/hr (about 2.5 cups a day) was more than she could clear from her stomach. But they'll be restarting the food at a slower rate, and giving her some food intravenously as well. They are turning down the nitric oxide to try to prevent toxicity. We'll see how she tolerates that. She's still at 95% inspired oxygen, nowhere near the 40% or so that would let them think about breathing her by mask. Overall I think I'll focus on the chest X-ray. :)
Oh, I told the nurses, here we get 6 kids through middle school drug free, and now Lydia's using morphine and Versed before she even turns 3. Sigh. You can't win 'em all.
Thank you to all of you who have been expressing love and concern and solidarity.
Kevin
Oh, I told the nurses, here we get 6 kids through middle school drug free, and now Lydia's using morphine and Versed before she even turns 3. Sigh. You can't win 'em all.
Thank you to all of you who have been expressing love and concern and solidarity.
Kevin
Sunday, January 30, 2011
Lydia update #14
Lydia is overall about the same; still very sick, on a ventilator, on 100% O2. The plan is to wait until she doesn't need the inhaled nitric oxide to keep her blood oxygenated before trying to un-paralyze her. She is getting a little food finally, at this point about 2 cups a day of special high nutrition milk shake type stuff through a tube.
Our congregation at church is fasting for Lydia (see below). For those of you unfamiliar with that practice, you can click on this sentence for information.
Kevin
Our congregation at church is fasting for Lydia (see below). For those of you unfamiliar with that practice, you can click on this sentence for information.
To all members of the Webster Groves Ward:Lots of people have been very kind to us. Thank you all. We'll keep you informed.
It has been suggested that it might be appropriate for the ward to hold a special fast for Lydia Black. The Ward Council has discussed this and agrees that it is appropriate. While such events are quite unusual we believe that the extremity of Lydia's circumstances and the special need for our Heavenly Father to be with her and her family at this time prompt us as a council to invite all members of the Ward to participate in a special fast. We encourage everyone whose circumstances allow to participate with us and we want to make the blessings of participation available to all who desire them.
For those who don't know, Lydia Black is currently in the ICU at Children's Hospital where she has been for more than a week fighting a severe lung infection. ...
There are doubtless many of you who feel as we do, wondering how we can be helpful to the Black family and to Lydia while understanding that we are substantively powerless to provide any but supportive assistance, company and the faith of our prayers. However, we have faith, as you do, that we can evoke the blessing of our Heavenly Father through prayer and fasting and by approaching him more perfectly with our supplications.
Officially we will fast from dinner tomorrow (Sunday) until dinner Monday. However, if your circumstances make it easier to fast tonight (Saturday) to tomorrow (Sunday) that would also be appropriate.
Whether you are able to fast or not please remember the Black family and Lydia in your prayers. It would be appropriate to send this email to anyone who knows the Blacks and would benefit from fasting with us on Lydia's behalf.
Yours,
The Webster Groves Ward Council
Kevin
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
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