Duchenne Muscular dystrophy: a lesson learned.

These past 2 nights working, i had a pt with trach on a vent. First night at work i heard he had 2 baths ordered and the nurse who was signing did the first bath before dayshift ended and i heard her mention how dead skin on the patient looked like huge moles. i can still picture her demonstrate how big they were and i thought "gross."
I didn't know what the patient's diagnosis was, i thought he was younger than he was and his mom was at the bedside. All night she was there, comforting him, and the he was anxious and kept calling her all the time.
One of the things i thought of after working friday was why the guy was on a vent. i'd seen his hands that night and he has contractures. His figures are just curled in a fixed position. Getting his blood sugar is a whole different story. God forgive me but i thought he was someone who'd come of an accident with a spinal cord injury and looking at his mouth, i thought maybe he uses meth or something. May God help each and everyone of us to overcome our judgemental attitude.
Anyway, last night when i worked, i checked the charge report somewhere in the morning and realized the boy had Duchenne muscular dystrophy. He was 34yrs old. I think i checked because i'd heard the nurse saying his mom has been dealing with this for 30years and i know when we went to the room, he told the patient he'd like to have his mom.
Reading that charge report changed my attitude. How awful of me to have thought what i did! I thought of the disease process and remembered it's practically progressive muscle weakness and i thought of allt he stuff like gowers sign among the rest. How hard it must be for that mother of his and...him, the patient!
Earlier on i'd been thinking oh, why put someone on a vent when they are going to die, why put them through the pain. However, i changed my line of thought when i was walking home from the hospital.
I thought of how hard it must have been for the patient. Last night i realized he kept calling his mom when i came in because he was scared, he needed someone who could comfort him, like his mom. I realized he was a nice person, he really can't talk much with the trach but he makes sounds you can understand. I thought of how hard it must be to grow up and then at some point in your childhood, have progressive muslce weakness that prevents you from having a normal childhood like other children. How scary it must be! You get to be in a wheelchair so early you don't even get to go on a prom or a date. And how scary it must be when the respiratory system gets affected and have to rely on a ventilator to breath. I realized that must be quite scary, and hard on both a person and the parent. I thought the mom is a little "ignoring" but i do admire her for caring for the boy all these years. I judged and thought how can they not bathe the boy that good and let him have so much dead skin on but boy, it must be hard to bathe that boy alone. it takes 3 people in the hospital to do it. And to be with him everyday all these years takes a toll on the body. People abandon their babies when they think they've down syndrome. Living with a child with duchenne muscular dystrophy must be one of the hardest things any parent can go through.
I just read that these patients usually die before 30years of age. This patient was 34 and sure death is imminent especially if he's currently on assist control and has to get a pacer removed. It must be hard caring so meticulously for a son but then knowing he's going to die, you wouldn't have any grandkids or whatever. I think its a little depressing. I'm tearing up as i write this because my heart goes to the patient and his mom.
I think if he wants to live, then who can say 'hey, withhold so and so from him.' The interesting thing is that the guys brain was intact. I thought of the 15year old patient at st. chris' who had that disease with progressive muscle wasting but then his brain was out of it as well so he didn't know what was going on. He used a wheelchair, could cooperate sometimes with his mom and really wasn't a hard person to take care of. I thought of how his mom kept having hope, bringing him to the hospital, staying and carrying him around. Part of me wonders which one is better: being mentally capable of knowing what's wrong with you or being incapable of knowing it? i think the first one is scary but then its hard to determine if the second one isn't scarry because that 15y.o boy really didn't talk, he made some sounds and moved his head forward and backwords but this 34 y.o one here can talk save for the trach.
I think of these mothers who've been dedicated to their children. I don't know if i can do that. But the thing with good mothers is that they are there for you, no matter how bad you are, no matter how bad the world says you are, they love you, and they would dedicate their life, holding onto the hope, the invisible hope, that one day their child would get better.
God bless these mothers, my mother, all those who've toiled for their children. Those who've believed when no else believed. God bless our mothers, Happy mothers day.