The ravages of meningococcal septicemia
Feb. 17th, 2021 09:33 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
whitewriterMr 27 IVDU T1 respiratory failure from last week passed away.
I used to be on the end of life care committee before I left for midi and they never took me off the mailing list.
Whilst the emails are annoying, they do give closure if I see a name on the list that I've nursed.
We are generally not informed regarding outcomes. Mostly its word of mouth "so and so went to the ward did you see?" or "so and so passed away, so sad". But if they got better or went home or went to rehab, we wouldn't have a clue. So sometimes when patients or their families ask me how long they may need to stay in ICU, or how long their recovery will be, I genuinely tell them I have only ever worked in ICU (pretty much - one track career girl.... it has it's downsides ) and therefore have no idea. Once a year a patient will come in to thank us (and you'd have to be lucky to be on) and then you can see how well they're doing or their family will email our manager with an update and that gets passed on.
But otherwise when someone dies, it's not something that gets broadcasted. You'd have to ask (or be on the end of life committee mailing list).
There's a new Miss 27 and she's pretty cool even though her story
At the age of 2 in the year 2000 she got meningococcal septicaemia (MS).
She's now 22.
The rate of death from MS as I have recently read is approx. 10-13% (bloody high) of which the odds improve if you catch it early and initiate the correct treatment.
The symptoms in a 2 year old can be hard to capture though- sleepiness or listlessness, shying away from light, high fevers.
Purpura fulminans is the meningococcal rash that occurs- leading to disseminated intravascular coagulopathy and necrosis of vessels - and is what led Miss Bed 27 to have her fingers and legs amputated; and skin discoloration and significant scarring on her body similar to as though she had been a burns victim.
Related to her battle with MS she had a liver transplant as a child and has faced "chronic rejection". Her liver numbers are slightly raised but not overly so - similar how they might be if a regular person had a cup of wine or took some paracetamol -and her Creatine and Ur are slightly up but not as much to consider dialysis.
I wonder what her dating life is like, if she has one. If she would find someone willing to have a family with her (nothing in her history says there was an effect on her reproductive system) -- that being said; her transplant issues - chronic rejection - would definitely put her in the doctor's clinic for pregnancy. Then how would she take care of her children if she had any. Imagine being her parents; and signing the consent form for her multiple amputations - knowing she won't ever have a so called "normal life" and not knowing the implications of that for her future. [Like would she be okay with it? Will she be able to find her own success, happiness, friendships in spite of her stark differences from her peers? or would she forever be comparing and disparing at her ].
This admission; she was admitted due to esophageal variceal bleed (aka. she was vomiting blood) which meant she came in vomiting blood. The esophageal varices is due to the cruddy liver causing the veins where her esophagus meeting her stomach to become distended, and bleed. The liver transplant, was due to the meningococcal septicaemia and we're back to square one.
She's ventilated, and on 4mls/hr of Propofol and yet she still writes legibly on a piece of paper supported by cardboard, types on her laptop. I caught her shopping for products at Lush and I commented that I liked Lush too (I don't like the cost but it is nice stuff).
Apparently she has a job; working on the phone in a call center type thing (which sounds perfect for someone like her). However when I tried to ask her she looked confused and shook her head. So maybe that was handed over incorrectly.
I can tell from what she writes that she has some sass about her.
The other day when I was helping her nurse that day with a roll, we even had a conversation about Netflix shows. Apparently she likes Riverdale.
She's been intubated for 5 days now, and the end is in sight. Planning for extubation tomorrow.
I've negotiated her wash time (she prefers morning) and she'll tell me when she wants to roll.
I've been reading articles on breastfeeding and how covid-19 has impacted it; and figuring out her history; and now I might do some HETI. It's only 22:30...
It's going to be a long night.
Miss 27 is currently on a video call with her family at the moment and there is a lot of gesturing for someone who is on a ventilator. Certainly no one sided conversation going on there. I'm trying not to eavesdrop and allow her some privacy.
Imagine being her family. You've taken care of this child whom is now a toddler - for 2 years. They became unwell quickly and life and death decisions leading to limb amputation and transplant decisions being made over a 2 year period. It quite well may have taken over their entire lives for the last 2 years. If one parent was working; they may possibly have had to quit in order to keep up with all the decisions and treatments being made. And after all of that; you are left with a child with no legs, and 3 stumps on either hands for fingers, a lot of scarring all over her body and who knows what other damage - psychological - and to her future options are left.
It makes me think of friends whom I have felt have pushed me away after they had children. Or perhaps it was I who pushed them away. If their child went through an event such as meningococcal septicemia would I return? Would I offer to help out? Or would I just leave it be and remain in my bubble. Where I am me. With my cat and my Pete. And I just observe the lives of others. Taking care of them for a shift or two, and going home and just writing about what I think from afar.
I know that wouldn't be me. But I'm not an initiative taker - I offer help; and if they ask I'm more than happy to pitch in and provide, but if they say thanks and don't actually ask; or; if they do ask and I find it doesn't seem genuine I get the shits and feel used.
I'm in a particularly dark part of The Genesis Project.
I've been taking notes as I read, and I'm planning on some sort of epic review in which to honor the 15 part alternate reality saga.
It's by no means the perfect series but after the ambling nature of parts 3, 4, 5, and 6 it's picked up hard and I'm loving it. It's become a painfully interesting read. Overall its a positive story with happy endings for most scenarios, but it's definitely not without its angst and turns in between. The timing of the plot points is particularly enjoyable which is even better as the series is long. The author must have spent a considerable amount of time planning things out. Or I wonder if she wrote it organically and it just seemed to flow in her mind. I'd like to ask if I could.
I'm trying not to read fanfiction whilst at work.
I used to be on the end of life care committee before I left for midi and they never took me off the mailing list.
Whilst the emails are annoying, they do give closure if I see a name on the list that I've nursed.
We are generally not informed regarding outcomes. Mostly its word of mouth "so and so went to the ward did you see?" or "so and so passed away, so sad". But if they got better or went home or went to rehab, we wouldn't have a clue. So sometimes when patients or their families ask me how long they may need to stay in ICU, or how long their recovery will be, I genuinely tell them I have only ever worked in ICU (pretty much - one track career girl.... it has it's downsides ) and therefore have no idea. Once a year a patient will come in to thank us (and you'd have to be lucky to be on) and then you can see how well they're doing or their family will email our manager with an update and that gets passed on.
But otherwise when someone dies, it's not something that gets broadcasted. You'd have to ask (or be on the end of life committee mailing list).
There's a new Miss 27 and she's pretty cool even though her story
At the age of 2 in the year 2000 she got meningococcal septicaemia (MS).
She's now 22.
The rate of death from MS as I have recently read is approx. 10-13% (bloody high) of which the odds improve if you catch it early and initiate the correct treatment.
The symptoms in a 2 year old can be hard to capture though- sleepiness or listlessness, shying away from light, high fevers.
Purpura fulminans is the meningococcal rash that occurs- leading to disseminated intravascular coagulopathy and necrosis of vessels - and is what led Miss Bed 27 to have her fingers and legs amputated; and skin discoloration and significant scarring on her body similar to as though she had been a burns victim.
Related to her battle with MS she had a liver transplant as a child and has faced "chronic rejection". Her liver numbers are slightly raised but not overly so - similar how they might be if a regular person had a cup of wine or took some paracetamol -and her Creatine and Ur are slightly up but not as much to consider dialysis.
I wonder what her dating life is like, if she has one. If she would find someone willing to have a family with her (nothing in her history says there was an effect on her reproductive system) -- that being said; her transplant issues - chronic rejection - would definitely put her in the doctor's clinic for pregnancy. Then how would she take care of her children if she had any. Imagine being her parents; and signing the consent form for her multiple amputations - knowing she won't ever have a so called "normal life" and not knowing the implications of that for her future. [Like would she be okay with it? Will she be able to find her own success, happiness, friendships in spite of her stark differences from her peers? or would she forever be comparing and disparing at her ].
This admission; she was admitted due to esophageal variceal bleed (aka. she was vomiting blood) which meant she came in vomiting blood. The esophageal varices is due to the cruddy liver causing the veins where her esophagus meeting her stomach to become distended, and bleed. The liver transplant, was due to the meningococcal septicaemia and we're back to square one.
She's ventilated, and on 4mls/hr of Propofol and yet she still writes legibly on a piece of paper supported by cardboard, types on her laptop. I caught her shopping for products at Lush and I commented that I liked Lush too (I don't like the cost but it is nice stuff).
Apparently she has a job; working on the phone in a call center type thing (which sounds perfect for someone like her). However when I tried to ask her she looked confused and shook her head. So maybe that was handed over incorrectly.
I can tell from what she writes that she has some sass about her.
The other day when I was helping her nurse that day with a roll, we even had a conversation about Netflix shows. Apparently she likes Riverdale.
She's been intubated for 5 days now, and the end is in sight. Planning for extubation tomorrow.
I've negotiated her wash time (she prefers morning) and she'll tell me when she wants to roll.
I've been reading articles on breastfeeding and how covid-19 has impacted it; and figuring out her history; and now I might do some HETI. It's only 22:30...
It's going to be a long night.
Miss 27 is currently on a video call with her family at the moment and there is a lot of gesturing for someone who is on a ventilator. Certainly no one sided conversation going on there. I'm trying not to eavesdrop and allow her some privacy.
Imagine being her family. You've taken care of this child whom is now a toddler - for 2 years. They became unwell quickly and life and death decisions leading to limb amputation and transplant decisions being made over a 2 year period. It quite well may have taken over their entire lives for the last 2 years. If one parent was working; they may possibly have had to quit in order to keep up with all the decisions and treatments being made. And after all of that; you are left with a child with no legs, and 3 stumps on either hands for fingers, a lot of scarring all over her body and who knows what other damage - psychological - and to her future options are left.
It makes me think of friends whom I have felt have pushed me away after they had children. Or perhaps it was I who pushed them away. If their child went through an event such as meningococcal septicemia would I return? Would I offer to help out? Or would I just leave it be and remain in my bubble. Where I am me. With my cat and my Pete. And I just observe the lives of others. Taking care of them for a shift or two, and going home and just writing about what I think from afar.
I know that wouldn't be me. But I'm not an initiative taker - I offer help; and if they ask I'm more than happy to pitch in and provide, but if they say thanks and don't actually ask; or; if they do ask and I find it doesn't seem genuine I get the shits and feel used.
I'm in a particularly dark part of The Genesis Project.
I've been taking notes as I read, and I'm planning on some sort of epic review in which to honor the 15 part alternate reality saga.
It's by no means the perfect series but after the ambling nature of parts 3, 4, 5, and 6 it's picked up hard and I'm loving it. It's become a painfully interesting read. Overall its a positive story with happy endings for most scenarios, but it's definitely not without its angst and turns in between. The timing of the plot points is particularly enjoyable which is even better as the series is long. The author must have spent a considerable amount of time planning things out. Or I wonder if she wrote it organically and it just seemed to flow in her mind. I'd like to ask if I could.
I'm trying not to read fanfiction whilst at work.
