LorenzoStomp

LorenzoStomp t1_iu97anf wrote

No sunscreen, constant drinking and smoking from a young age, barely existent healthcare and wacky ideas about proper nutrition/less access to a variety of food (plus nonexistent environmental, food and medical safety laws). Everybody was either outside getting sun damage or inside breathing their own and other people's smoke constantly from birth, eating meat that wasn't properly handled and potatoes that may have been covered in pesticides we now ban, and taking "medicines" that maybe did fuckall and maybe had cocaine or heroin or lead or mercury or probably just straightup little shards of glass in it.

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LorenzoStomp t1_irw084t wrote

When my client went to the hospital he was running a high fever. The hospital gave him a small amount of aspirin to reduce it but refused to give more because it might hurt his liver, even though we knew by that time he wasn't going to recover. They also argued about giving him ketamine to keep him under even after his mother explained multiple times that he was resistant to milder sedatives and aggressive when upset/confused.

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LorenzoStomp t1_irr7z29 wrote

The first couple days he was in the hospital, he was sedated but would sort of wake up every few hours. His mom had to argue with the Dr to keep him completely under, when I talked to the nurses about how he shouldn't be allowed to wake up one told me, "Let him say goodbye" which was ridiculous because he had the mind of a 2 yr old. He couldn't understand what was happening, just that he was uncomfortable and somewhere strange. Once he was home he was kept completely under so he couldn't be aware of anything and was given morphine along with whatever else they used so he wouldn't feel pain. When he passed he just stopped breathing.

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LorenzoStomp t1_irn4ucz wrote

I did in-home care for a kid with mucopolysaccharidosis III aka Sanfilippo. He was misdiagnosed with PDD-NOS/atypical autism for most of his life, because even though it's a simple pee test to diagnose it's so rare no one thought to do it until he started declining severely in late adolescence. Someone might have caught on sooner if any of his siblings had also had it but somehow he was the only one of 8 kids (with a 1 in 4 chance) to inherit the gene defect from both parents.

His parents were able to keep him at home for most of his life except for 2 years when he had to go to a group home because they weren't able to find another carer for him after I herniated a disc in my back (he could be extremely aggressive and his parents were older/had physical disabilities). When he aged out of children's services at 21 his mom really hustled to get funding and arrange 24/7 care for him at home and his dad built onto their house to make an apartment for him. I was able to come back as support staff for his last year and a half at home. We worked to keep him as active and functional (and entertained) as possible but his CNS slowly degraded and he finally couldn't swallow at all. An abdominal port for a feeding tube wasn't an option (he would've had to have been either heavily sedated or physically restrained at all times to keep him from messing with it) so his parents decided to enter him into hospice where he was kept comatose until he passed of dehydration. It was rough but a lot quicker than what some kids get, spending years bedbound before passing.

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