1/ How do Children Suffer after ICU?

Today the mom of a 4 y/o boy who is in 📚#EveryDeepDrawnBreath wrote me & said to share this pic (w his twin). The family’s story can help us understand life after #CriticalIllness:

“Dr. Wes, we are 2 years out & he’s got a new limp!”
WHY?
2/ Mom writes: “Many appointments later we have learned that either his septic shock, ECMO, or the strokes caused damage to his growth plates. His left leg & foot are shorter than his right leg & right foot.”

This feature of pediatric #PICS will also affect sick #COVID19 kids.
3/ She goes on… “The doc at the children's hospital who we see said any of these 3 conditions can cause this to happen and our son had all three (strokes, septic shock, ECMO).”
4/ PTSD has invaded the whole family - Mom says: “Even 2 years out, our whole family is still very much affected. Just last week, when my son and I left for his appointment, his brother panicked, afraid we weren't coming back.”
5/ “A couple months ago I had gone to the kids' room to get them up for school. They all 3 sleep together and his brother & sister were snoozing away but he wasn't anywhere to be found. The kids didn't know where he was. I searched all the bedrooms & the rest of the house.”
6/ “Immediately my mind went to ‘he has been dead this whole time and I just dreamed that he was still with us.’ When my thoughts went there, I went absolutely berserk, crying and yelling for my husband.” 😭
7/ “My husband found him asleep in the closet floor and the kids stood there trying to figure out what in the heck is wrong with mom? I was messed up for a whole week.”
 
This is the reality of #PICS and will be part of #LongCOVID, too, after the ICU.
8/fin
There is so much we can do to lift-up ICU Survivors. Our @CIBScenter help patients & families in recovery after #CriticalIllness through support groups, cognitive & physical rehab, counselling. First listen & validate! That’s what the book is about:👇
BTW, this courageous boy wants to share his story because his sister & friends were very confused about why he “disappeared” (while in ICU) & couldn’t play w them afterwards. It’s super important to remember that he owns his own story & it’s his gift to us. 🎁

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More from @WesElyMD

3 Aug
1/🧵🎥 Former ICU Nurse with #LongCOVID👇 describes disabling #POTS (Postural Orthostatic Tachycardia Syndrome)
 
“I'm an Ivy League grad & former ICU nurse who got COVID a year ago (before #vaccination). I had no medical problems & now suffering Long COVID so badly…”
2/ …”that I can’t work in the ICU and basically have a desk job. POTS & Long COVID gave me a racing heart, dizzy head & inability to function adequately in life. It’s horrible. My brain fog makes it impossible to execute tasks to care for patients. Life as I knew it seems over.” Image
3/ …she said, “It irks me to hear people downplay this disease when I'm suffering this badly a year later. I’ve been vaccinated myself now. We are surging again. People are scared. Let’s talk this out & find a way out of the €%£! pandemic.”
Read 9 tweets
2 Aug
1/🧵Moral Injury: #DeltaVariant surge & ICU beds shortages pose big risk
 
In my last week’s @WashingtonPost piece, I wrote, “Any health-care professional who has to make impossible ethical choices likely incurs MORAL INJURY.”

What is moral injury?

wapo.st/3l0gqJP
2/ This article tackles it: bit.ly/2Vp0Rka
It’s not burn-out, which is characterized by exhaustion, cynicism, and decreased productivity.
Moral injury occurs when we’re forced to make decisions that go against our deeply held beliefs.
3/ Moral injury was used in 2009 to describe Iraq soldiers’ responses to actions in war. It is “perpetrating, failing to prevent, bearing witness to, or learning about acts that transgress deeply held moral beliefs and expectations.”
 
bit.ly/37aI3YJ
Read 7 tweets
2 Aug
1/🧵 My interview w @FoxNews @DavidRutz talking about how to overcome #VaccineHesitancy:
 
My #1 point: "The main thing is to listen. As soon as we start jamming stuff down someone’s throat, they quit listening because we’re not listening to them.”
 
fxn.ws/3yjh8pw
2/ "So what I found is just to be a person & say, 'I'm looking at you in the eyes,' I'm here for you, and I want to listen to what what's going on with you, and you tell me, please, what is it that's getting you afraid?' …
3/ “Try and really understand, put yourself in their place and then on an individual basis, address each fear…1 by 1..."
Read 7 tweets
2 Aug
1/🧵 The Road to #LongCOVID:

In her @ScienceMag piece, @Dr2NisreenAlwan teaches that @Twitter & FB served a purpose but can’t remain our authority in defining devastating disability suffered by millions after #COVID19. We must have more science!

bit.ly/2Wv8Lcf
2/ In 2020 the main support for pts with prolonged symptoms came from online testimonials and absent community testing sites, people were left to guess as to whether or not their crazy symptom profile was due to COVID.
3/ “A common theme emerged: lack of recognition by the medical profession. Patients, including doctors, w #LongCovid consulted healthcare providers & their symptoms were commonly minimized, dismissed, or labeled as anxiety.”
 
#Stigma #Discrimination #MECFS
Read 10 tweets
26 Jul
1/🧵🎥 This story has a GOOD ENDING!

Look how my patient’s right leg flails around. This is INVOLUNTARY. He’s trying to stop but his brain is doing this against his will. It is “hemiballismus” & was caused by a fungus deep inside his brain. Read🧵
Link: bit.ly/3ixnWcx
2/ He was having these movements day & night. Unable to sleep. We admitted him to our ICU and realized the fungus Cryptococcus was causing a brain infection called meningitis. He had  no underlying immune diseases or other health problems.

Another 🎥, all shown w his permission
3/ His MRI showed 2 pockets of infection on both sides of his brain in a place called the basal ganglia, which controls movement. This area had to heal for him to rest and be at peace again.

#medtwitter
Read 7 tweets
23 Jul
1/🧵 #LongCovid: Lumper vs Splitter terminology

🎥👇This man is suffering a form of longCovid wrought by complications of his ICU illness. He’s a clear example of the most severe form of #longCovid, also known as #PICS, for “post intensive care syndrome”…

@Dr2NisreenAlwan
2/ There are vastly different ways Covid will affect people over future months & years. Do we split those into multiple diseases or lump them into 1 big syndrome (w subgroups) to grab millions of people & help grow advocacy & gain footing?
3/ #PICS is mainly encompassed by cognitive difficulties, an acquired dementia called ADRD (#Alzheimers Disease & Related-Dementias), as well as #PTSD and depression PLUS profound muscle and nerve disease called ICU-AW (ICU Acquired Weakness).
Read 5 tweets

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