What is Osteogenesis Imperfecta
Osteogenesis imperfecta is a group of genetic bone disorders. It is one of the brittle bone diseases. People with OI either have less collagen than normal or the quality is poorer ...
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Hospital crisis- Any advice helpful.
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Please, please, please help us...
My mother-in-law to be is a wonderful lady with Osteogenesis Imperfecta. About ten years ago she was thrown from a horse and had many of her bones broken, and has been bed-bound since then. She has had a catheter for many years which leaks as much as it works. After my future father-in-law lost the house, she came to move in with my fiance and I, and I became her home health care worker. Let me just start off by saying I'm not a nurse. I'm a jeweler by trade. I know nothing about caring for someone. I can count all of my days in a hospital for myself on one hand. Coming to this family where hospital visits outnumber vacations is pretty crazy, though I wouldn't give it up for anything. Less than two weeks ago she fell early one morning while I was trying to take care of her needs and ended up in a hospital 50 miles away from my fiance and I because she had multiple skull fracture, a severely broken neck (They wanted to do surgery, but her survival rate as actually better because of the OI to see if she could heal on her own), and a fracture in her lower back which had apparently been there since before the fall. Since she has been at the hospital, we've tried between my fiance and myself, his older sister, and his younger sister and her boyfriend, to have someone there at the hospital around the clock just to make sure everything is alright. But, of course, life gets in the way and that isn't how it's worked out. First, an x-ray tech was trying to make sure her neck was properly aligned in her new collar. He refused to stop moving her arm when she said it hurt, telling her to "deal with it," when they heard a series of pops which turned out to be several of her ribs under her shoulder blade fracturing. Second, a nurse who was in a hurry hadn't had time to ever read the info we had typed up for her bullet-pointing everything that really matters about her medical charts. She asked me to help to roll her for a change and even after I told her not to put any pressure on her ribs, proceeded to do just that. When I reaffirmed that she can't have direct pressure and we decided to start again, she did the exact same thing and broke her ribs on the other side (although the x-ray failed to show them so it's unconfirmed, but anyone with this disease knows that you can tell.) THEN.. While trying to change her foley catheter, the nurse heard a loud pop, while lifting her legs. This seems to have been potential fractures (we'll be lucky if they aren't breaks) in her hips, as well as potential breaks and fractures in both legs. And this is all on top of the fact that we have had nurses in there that don't give a rats' butt what any of us (the family) have to say, crap like what the x-ray tech, and after the nurse broke her ribs right there in front of me, I got on the phone with the manager of the house who was on-call 24 hours. When I explained the situation to her, her reply was "Well, if she's so fragile, how has she gotten through life?" When she said that, I just about lost it. Give me one broken rib, and I cry like a baby. Give my mother-in-law a whole ton of them, and she cries, and then feels like a baby for crying. My fiance and mother-in-law are the greatest people I have ever known. They have come through so much suffering, and still see the good in this world. Now, at this point, they have really screwed themselves because with her catheter leaking like it does, she really has to be checked and changed ALL THE TIME. Now they can't turn her, they can't lift her, they are going to have a heck of a time doing anything apart from transfering her, but where would they transfer her to? She has awful bedsores on her backside that I had just cleared up (I learned when she entered the hospital) and we're really at our wits end. We're going to try to have her moved to a hospital closer to us so we can keep better track of her without going broke or wearing ourselves to a frazzle, but we just don't know how to make the hospital understand short of my fiance and I being there literally 24/7. (We have a wedding to plan, we're trying to start a family, and he has a job that is our bread and water and he is at risk of losing his job because he doesn't have enough time after all of the phone calls, trips to the hospital, and I just became unemployed when she got admitted to the hospital, etc.) If you're still reading, thank you. We really need any advice or prayers or anything anyone can give us. We just don't know what to do anymore, and this is really testing our ability to stay clam. We aren't mad at each other, but we need to try to find some peace for his wonderful, sweet mother. All she's worried about is us getting enough rest and not worrying about her. I'd really like to grant that wish. Posted on 08/09/09, 07:08 am |
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WOW YOUR STORY IS SAD. PLEASE KNOW THAT NO MATER IF YOU ARE A PERSON WHO HAS ALL THE KNOWLAGE ABOUT OI THERE WILL STILL BE FRACTURS PROBLEMS.. MANY WILL WILL SEEM TO HAVE NO CAUSE THIS IS BECAUSE THE BONES FRACTURE A LITTLE AT A TIME OR WEAKEN A LITTLE AT A TIME.
AS OI PEOPLE GET OLDER JUST LIKE ANY OLDER PERSON THEY ARE MORE AND MORE PRONE TO FRACTURES. THERE ARE VERY FEW MEDICAL PERSONELTHAT KNOW OR HAVE EVEN SEEN OI IT IS A VERY RARE CONDITION. . IT IS VERY HARD TO MAKE PEOPLE WHO HAVE NOT BEEN AROUND OI TO UNDERSTAN HOW VERY EASY AN OI WILL BREAK . EACH OI IS SO VERY DIFFERENT. EVEN THE MOST CARRING AND GENTAL NURSE OR DOCTOR CAN CAUSE A FRACTURE BUT IN REALITY IT IS NOT THEM IT IS THE OI PERSON HWO BREAKS SO VERY EASY AND MOST TIMES IT IS NOT THE MEDICAL STAFS FAULT. THERE ARE GOING TO BE MANY FRACTURES. . MY SON COULD LIFT HIS ARE TO HIT A BALLOON AND BREAK HIS ARM. IT JUST THAT THE BONE IS A WEAK SPOT THAT GETS WEAKER OVER TIME AND BAM IT BREAKS . I AM SO SORRY TO HEAR OF YOUR MOTHER INL;AWS DIFFICULT TIME. PLEASE TRY NOT TO BLAM ANYONE . THERE IS NO WAY TO KNOW WHEN A BONE WILL BREAK . MY SON CAN DO SOMETHING 500 TIMES AND WHNE 501 COME AROUND HE FRACTURES. NO VISABLE REASON. BUT IF WE COULD LOOK IN SIDE WE WOULD SEE ALL THE WEAK PLACES. i COULD BE A GENTAL AS I CAN BE AND STILL MY SON WOULD FRACTURE. IN AN OI FRACTURE HURT BUT NOT NEAR LIKE IT WOUL HURT AS NORMAL PERSON. THIS IS BECASE IT TAKE SUCH A SMAL AMOUT OF PRESSUER OR MOVEMENT TO CAUSE A FRACTURE. THERE I VERY LITTLE SUROUNDING TISSUE DAMAGE IN OI FRACTURES . IF ANORMAL PERSON BREAKS THIR ARM THERE WILL BE A LOT OF TISSUE DAMAGE AROUND THE FRACTURE. THE IS THE REASON SOME TIMES OIs DO NOT KNOW THEY HAVE A FRACTURE. MY SON HAS HAD MAYBE 400 FRACTURS IN HIS LIFE MOST WERE BEFORE HE WAS 18. HIS FRACTURES HAPPENED DURING NORMAL ACTIVITY . THE FRACTURE WILL HAPPEN EVEN IF YOU ARE WITH HER 24/7 OR NOT YOU CAN ONLY DO YOU BEST TO COPE AND TRY TO KEE HER COMFORTABLE. . EVERY MEMBER OF MY FAMILY HAVE BEEN BLAMED FOR MY SONS FRACTURE. BUT IT IS NOT THEIR FAULT YOU CAN NOT PREDICT WHEN A FRACTURE WILL OCCURE .. MY SON HAD TIMES WHEN HE FELL HARD AND A PRETTY LONG DISTANCE BUT HAD NO FRACTURES. THEN OTHER TIMES DOING NOTHING HE WOULD FRACTURE. IT IS JUST THE NATURE OF THE CONDITION SAD BUT TRUE . I WILL KEEP YOU GUYS IN MY PRAYERS . HANG IN THERE GIVE MY LOVE TO YOUR MOTHER IN LAW AND TO HER WHOLE FAMILY. MY SON IS 39 YEARS OLD 3 FEET 10 INCHED TALL, CAN NOT WALK BUT CAN DRIVE A CAR AND HE IS MARRIED HAS NOT HAD A FRACTURE SINCE HE WAS 28 ANN 
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