otis
06-07-2007, 07:42 AM
It has been a while since I have posted.
My son (Jeff) age 20 has duchenne muscular dystrophy. Well I had to take him to the emergency the end of April for a cold and gulping air. Took him to OU Medical Center (which is the worst hospital) they told me he had a bit of drainage from his sinus and and told me if I wanted to we could stay for observation. So we went home. That was Friday early Saturday morning. Saturday night I had to take him back he was gulping air again.
This time they found air on his stomach and placed a tube into his stomach from his nose. Scared him so bad he made them pull it back out. So he gets put into ICU and given laxatives that he can only take a very limited amount at any time because of the air. So they write in his chart that he was refusing treatment (found this out a week later). They put him on a bipap and oxygen.
The second morning in the ICU he has this doctor (quack) come in and start talking about end stages of DMD and she wants him to sign a living will. Well we think this doctor is a nut. The next morning she comes in and does it again and Jeff signs a DNI. My son was only suspose to be ICU because three are more nurses.
The next morning I ask the doctor to step outside of Jeff’s room and ask what is going on and looks at me and says “I don’t have to tell you anyting about Jeff’s case because he now an adult and I don’t have a power of attorney” but she went ahead and pulled me into her office and told me that Jeff is in the end stages of DMD his diaphragm was weakened from all of the air on the stomach and the progression of the disease. She also told me that Jeff only has 1 week to 6 months left.
While he was in ICU he has a seizure we don’t know if it is from sulfur or from to much Co build up. So we get him over this and the hospital wants to move him form ICU to the 6th floor. So I think it was maybe the next day they go to move him and during the move he has another seizure. Finally get him to his room and get stable again.
At this point the hospital is done with us and just wants us gone.
The night before Jeff gets to come home the nurses are suspose to make sure Jeff is not disturbed so he can get some rest and maybe wont have another seizure on his way home.
My daughter stays at the hospital this night. Around midnight my daughter calls me because she is having problems with one of the nurses so me and my husband go to the hospital to find out what is going on. We are talking to my daughter to find out what is going on and this nurse, the supervisor and the charge nurse walks past us and goes into and office. We go back to talking to my daughter and all of these people walk out of this office and the nurse verbal assaults me and my daughter. Get this I don’t think anything was done to her because she just went back to work and we went and talked to the charge nurse.
OU helped us get hospice involved and they want to send him home.
Jeff was sent home on May 2 with Excel Hospice and is on a bipap and oxygen 24 hours a day. He is doing pretty well.
My son (Jeff) age 20 has duchenne muscular dystrophy. Well I had to take him to the emergency the end of April for a cold and gulping air. Took him to OU Medical Center (which is the worst hospital) they told me he had a bit of drainage from his sinus and and told me if I wanted to we could stay for observation. So we went home. That was Friday early Saturday morning. Saturday night I had to take him back he was gulping air again.
This time they found air on his stomach and placed a tube into his stomach from his nose. Scared him so bad he made them pull it back out. So he gets put into ICU and given laxatives that he can only take a very limited amount at any time because of the air. So they write in his chart that he was refusing treatment (found this out a week later). They put him on a bipap and oxygen.
The second morning in the ICU he has this doctor (quack) come in and start talking about end stages of DMD and she wants him to sign a living will. Well we think this doctor is a nut. The next morning she comes in and does it again and Jeff signs a DNI. My son was only suspose to be ICU because three are more nurses.
The next morning I ask the doctor to step outside of Jeff’s room and ask what is going on and looks at me and says “I don’t have to tell you anyting about Jeff’s case because he now an adult and I don’t have a power of attorney” but she went ahead and pulled me into her office and told me that Jeff is in the end stages of DMD his diaphragm was weakened from all of the air on the stomach and the progression of the disease. She also told me that Jeff only has 1 week to 6 months left.
While he was in ICU he has a seizure we don’t know if it is from sulfur or from to much Co build up. So we get him over this and the hospital wants to move him form ICU to the 6th floor. So I think it was maybe the next day they go to move him and during the move he has another seizure. Finally get him to his room and get stable again.
At this point the hospital is done with us and just wants us gone.
The night before Jeff gets to come home the nurses are suspose to make sure Jeff is not disturbed so he can get some rest and maybe wont have another seizure on his way home.
My daughter stays at the hospital this night. Around midnight my daughter calls me because she is having problems with one of the nurses so me and my husband go to the hospital to find out what is going on. We are talking to my daughter to find out what is going on and this nurse, the supervisor and the charge nurse walks past us and goes into and office. We go back to talking to my daughter and all of these people walk out of this office and the nurse verbal assaults me and my daughter. Get this I don’t think anything was done to her because she just went back to work and we went and talked to the charge nurse.
OU helped us get hospice involved and they want to send him home.
Jeff was sent home on May 2 with Excel Hospice and is on a bipap and oxygen 24 hours a day. He is doing pretty well.