3 ms·

Wow that’s crazy, I’ve revived my daughter probably 20 times with CPR. 99% of the time we just do the breaths, haven’t had to break a rib yet, so I guess it’s m

by wincy 6y ago

Wow that’s crazy, I’ve revived my daughter probably 20 times with CPR. 99% of the time we just do the breaths, haven’t had to break a rib yet, so I guess it’s more PR than COR. You get pretty good at giving breaths when your two year old needs it or she’ll die I suppose. You just do what you have to do and blow through all the spit and human fluids to get air where it needs to go. Despite knowing what to do and it being almost muscle memory at this point, it’s always harrowing to try to bring someone back, and my adrenaline still pumps with a big sigh of relief when her eyes flutter open and she starts crying.

Edmond 6y ago
care to elaborate on why your toddler needs so much CPR?
- dannykwells 6y ago
  Yeah one of the more intense but also kind of nonchalant posts I've seen in a long time.
  - wincy 6y ago
    I responded to another comment here about why she needs breaths. Basically she has a complication from a spinal defect that causes breath holding, which some kids hold their breath but a normal kid will just pass out and start breathing again. For her, she needs breaths (usually with an oxygenated bag and mask that we keep at home) to get her to wake back up. The first time we tried to give her breaths at home we had to call an ambulance and she went back to the NICU for another 6 months. She spent the first 9 months of her life there. She’s actually a pretty normal two year old now aside from not being able to walk, and the breath holding. Honestly it’s pretty normal at this point for me and my wife so I’m fairly nonchalant about it. Her rate of breath holding has gone way down since we found medication that makes a huge difference. As she gets older it should happen less as her conscious brain becomes better at overriding her emotions. I do what I need to do and if I didn’t compartmentalize I wouldn’t be able to function day to day. Didn’t really expect to get tone policed on Hacker News though.
    - cdogl 6y ago
      FWIW, I thought the nonchalance was a good thing. As you say, there’s no point getting emotional about it online when it’s just a part of your life that needs to be dealt with.
- wincy 6y ago
  PEAC brought on my Chiari II malformation which is a condition where your brain is “squished”, in her case due to her spina bifida.
  - Engineering-MD 6y ago
    I’m thinking this is what you are referring to? Just for others I think PEAC refers to “Prolonged expiratory apnoea with cyanosis” https://www.researchgate.net/publication/314160379_Prolonged_expiratory_apnoea_with_cyanosis_in_Arnold_Chiari_II_malformation https://www.researchgate.net/publication/314160379_Prolonged...
    - wincy 6y ago
      Yes, she turns blue. It’s really scary to people who haven’t seen it before.
ARandomerDude 6y ago
I doubt the truth of this comment. > probably 20 times 20 times is too many. Focusing on the "probably:" my son had some significant health issues a couple years ago, and almost died twice. I remember every detail vividly, like it happened 5 minutes ago. > 99% of the time we just do the breaths, haven’t had to break a rib yet If you haven't had to break a rib yet, you just do breaths 100% of the time. > You just do what you have to do and blow through all the spit That's the sort of thing you say about strangers, not your kids who have peed and drooled on you countless times, not to mention drank your water and eaten 1/2 your sandwich. Etc.
- wincy 6y ago
  My daughter has spina bifida with a condition called PEAC due to Chiari II malformation. She has a breath holding spell at least once a week, where she turns blue and needs to be resuscitated. It’s precipitated by her getting upset or scared, and she’ll hold her breath. Her brain doesn’t properly “reboot” when she passes out and she won’t breathe. As for “blowing through the spit”, most of the time we have a bag and mask and she’s at home, so we’re able to administer breaths without having to use our mouths. My wife does this most of the time, as I work upstairs, and she’ll call me with the alarms we have set up in the house. When she was born we were told she’d be dead before age one, so I don’t know, I’m somewhat detached from it? She’s two now and doing pretty well, all things considered, although the night nurse had to give her breaths yesterday morning for no discernible reason. Sometimes it just happens. Maybe you’re right, maybe I wasn’t remembering vividly enough when I recall how a couple weeks ago she got upset and passed out in the back seat, as I frantically pulled over into a grocery store parking lot, trying not to get into an accident, then, looking back at her small body go rigid as she fought back the tears, trying not to hold her breath, realizing I was too late to soothe her, seeing her face turning blue, then pulling her little body out of her car seat trying not to hurt her since her muscles a locked up, and give her breaths in the dark, feeling her go limp as she passes out, getting worried after thirty seconds or so of her not coming back, telling Siri to call 911 and the countdown getting to 1 right as her little eyes flutter open as big as they can, terrified, canceling the 911 cal at the last second, then holding my dear sweet daughter that I love more than anything in the world as she cried, and I cried, and hugging her and telling her everything will be okay, that Daddy is here and won’t let anything happen to her. Then asking her if we should go home so she can rest but, bless her heart she still wanted to go grocery shopping because she loves doing that with her dad. Then she fell asleep on me sitting in the drivers seat, as I looked around for her glasses that I didn’t even remember flinging onto the floor when I plucked her from her seat, trying not to disturb her while I jostle around. Then maybe I misremember the part where I called my wife sobbing, asking her to come drive home with me because I’d made a mistake, it got too dark and I almost killed our kid by not being careful enough (again, I push her more than her mom does). My wife got there, held our darling girl who should be a toddler but can’t even crawl at a few months past 2, but we’re so proud of her for being able to kick her fat little legs, and we abandoned her car for the night and drove home together. So I didn’t get any groceries that day, unfortunately. It’s pretty difficult to focus on work when you’re “called out” by some stranger on Hacker News who doubts the sincerity of your statements about your child’s disability in the internet. I detach from it because crying while recounting a story (as I am now) makes it difficult to be a software engineer. It makes it difficult to be anything useful. I have to compartmentalize the pain, the doubts, the worries, or I’d never be able to write another line of code. I hope I’ve provided enough evidence to satisfy your doubts, though. She has myelomeningicele with a chiari II malformation, and PEAC due to the chiari. If you’d like some information I’ve provided some links below. If you were worried that I’m not doing CPR and just provided breaths, fair enough, but there are a thousand ways you could have phrased that which would have been less shitty. https://www.ortho.wustl.edu/content/Patient-Care/6885/Services/Pediatric-and-Adolescent-Orthopedic-Surgery/Overview/Pediatric-Spine-Patient-Education-Overview/Myelomeningocele.aspx https://www.ortho.wustl.edu/content/Patient-Care/6885/Servic... https://radiopaedia.org/articles/chiari-ii-malformation?lang=us https://radiopaedia.org/articles/chiari-ii-malformation?lang... https://medcraveonline.com/JPNC/peac-prolonged-expiratory-apnoea-with-cyanosis-in-arnold-chiari-ii-malformation.html https://medcraveonline.com/JPNC/peac-prolonged-expiratory-ap...

by wincy 6y ago

Edmond 6y ago

care to elaborate on why your toddler needs so much CPR?

dannykwells 6y ago
Yeah one of the more intense but also kind of nonchalant posts I've seen in a long time.
- wincy 6y ago
  I responded to another comment here about why she needs breaths. Basically she has a complication from a spinal defect that causes breath holding, which some kids hold their breath but a normal kid will just pass out and start breathing again. For her, she needs breaths (usually with an oxygenated bag and mask that we keep at home) to get her to wake back up. The first time we tried to give her breaths at home we had to call an ambulance and she went back to the NICU for another 6 months. She spent the first 9 months of her life there. She’s actually a pretty normal two year old now aside from not being able to walk, and the breath holding. Honestly it’s pretty normal at this point for me and my wife so I’m fairly nonchalant about it. Her rate of breath holding has gone way down since we found medication that makes a huge difference. As she gets older it should happen less as her conscious brain becomes better at overriding her emotions. I do what I need to do and if I didn’t compartmentalize I wouldn’t be able to function day to day. Didn’t really expect to get tone policed on Hacker News though.
  - cdogl 6y ago
    FWIW, I thought the nonchalance was a good thing. As you say, there’s no point getting emotional about it online when it’s just a part of your life that needs to be dealt with.
wincy 6y ago
PEAC brought on my Chiari II malformation which is a condition where your brain is “squished”, in her case due to her spina bifida.
- Engineering-MD 6y ago
  I’m thinking this is what you are referring to? Just for others I think PEAC refers to “Prolonged expiratory apnoea with cyanosis” https://www.researchgate.net/publication/314160379_Prolonged_expiratory_apnoea_with_cyanosis_in_Arnold_Chiari_II_malformation https://www.researchgate.net/publication/314160379_Prolonged...
  - wincy 6y ago
    Yes, she turns blue. It’s really scary to people who haven’t seen it before.

ARandomerDude 6y ago

I doubt the truth of this comment. > probably 20 times 20 times is too many. Focusing on the "probably:" my son had some significant health issues a couple years ago, and almost died twice. I remember every detail vividly, like it happened 5 minutes ago. > 99% of the time we just do the breaths, haven’t had to break a rib yet If you haven't had to break a rib yet, you just do breaths 100% of the time. > You just do what you have to do and blow through all the spit That's the sort of thing you say about strangers, not your kids who have peed and drooled on you countless times, not to mention drank your water and eaten 1/2 your sandwich. Etc.

wincy 6y ago
My daughter has spina bifida with a condition called PEAC due to Chiari II malformation. She has a breath holding spell at least once a week, where she turns blue and needs to be resuscitated. It’s precipitated by her getting upset or scared, and she’ll hold her breath. Her brain doesn’t properly “reboot” when she passes out and she won’t breathe. As for “blowing through the spit”, most of the time we have a bag and mask and she’s at home, so we’re able to administer breaths without having to use our mouths. My wife does this most of the time, as I work upstairs, and she’ll call me with the alarms we have set up in the house. When she was born we were told she’d be dead before age one, so I don’t know, I’m somewhat detached from it? She’s two now and doing pretty well, all things considered, although the night nurse had to give her breaths yesterday morning for no discernible reason. Sometimes it just happens. Maybe you’re right, maybe I wasn’t remembering vividly enough when I recall how a couple weeks ago she got upset and passed out in the back seat, as I frantically pulled over into a grocery store parking lot, trying not to get into an accident, then, looking back at her small body go rigid as she fought back the tears, trying not to hold her breath, realizing I was too late to soothe her, seeing her face turning blue, then pulling her little body out of her car seat trying not to hurt her since her muscles a locked up, and give her breaths in the dark, feeling her go limp as she passes out, getting worried after thirty seconds or so of her not coming back, telling Siri to call 911 and the countdown getting to 1 right as her little eyes flutter open as big as they can, terrified, canceling the 911 cal at the last second, then holding my dear sweet daughter that I love more than anything in the world as she cried, and I cried, and hugging her and telling her everything will be okay, that Daddy is here and won’t let anything happen to her. Then asking her if we should go home so she can rest but, bless her heart she still wanted to go grocery shopping because she loves doing that with her dad. Then she fell asleep on me sitting in the drivers seat, as I looked around for her glasses that I didn’t even remember flinging onto the floor when I plucked her from her seat, trying not to disturb her while I jostle around. Then maybe I misremember the part where I called my wife sobbing, asking her to come drive home with me because I’d made a mistake, it got too dark and I almost killed our kid by not being careful enough (again, I push her more than her mom does). My wife got there, held our darling girl who should be a toddler but can’t even crawl at a few months past 2, but we’re so proud of her for being able to kick her fat little legs, and we abandoned her car for the night and drove home together. So I didn’t get any groceries that day, unfortunately. It’s pretty difficult to focus on work when you’re “called out” by some stranger on Hacker News who doubts the sincerity of your statements about your child’s disability in the internet. I detach from it because crying while recounting a story (as I am now) makes it difficult to be a software engineer. It makes it difficult to be anything useful. I have to compartmentalize the pain, the doubts, the worries, or I’d never be able to write another line of code. I hope I’ve provided enough evidence to satisfy your doubts, though. She has myelomeningicele with a chiari II malformation, and PEAC due to the chiari. If you’d like some information I’ve provided some links below. If you were worried that I’m not doing CPR and just provided breaths, fair enough, but there are a thousand ways you could have phrased that which would have been less shitty. https://www.ortho.wustl.edu/content/Patient-Care/6885/Services/Pediatric-and-Adolescent-Orthopedic-Surgery/Overview/Pediatric-Spine-Patient-Education-Overview/Myelomeningocele.aspx https://www.ortho.wustl.edu/content/Patient-Care/6885/Servic... https://radiopaedia.org/articles/chiari-ii-malformation?lang=us https://radiopaedia.org/articles/chiari-ii-malformation?lang... https://medcraveonline.com/JPNC/peac-prolonged-expiratory-apnoea-with-cyanosis-in-arnold-chiari-ii-malformation.html https://medcraveonline.com/JPNC/peac-prolonged-expiratory-ap...