Livejim56
12-03-2006, 08:02 PM
I have been sorta lurking around as my life has been turend upside down. My wife Nancy (just turned 50) in an Acute Long term care facilty. She was diagnosed on 11 Aug 2006 at the Medical College fo Georgia- we were given a Bi-pap, cough asssist and a home suction machine and a Px for Rilutek it was also suggested we look into a peg. Nancy had lost a lot of weight and looked really bad and all she could eat was pudding and yougurt.
We had the peg surgery down on aug 15, 2006. Her arms and legs swelled and on the 21st of August we spent a day in the er with a possible congestive heart failure epsidode. Then on the 22nd back to Mcg for another Mri. At this time Nancy was using a walker and a wheelchair but could talk but it was pretty slurred.
On Sept 4 she had a shortness of breath feeling and was rusehd in the Easly Baptist Er. She was immedialty vented and they told me it did not look good. She was on the vent until the 16th of Sept, when they put in a trach.
She was moved on the 21st of Sept 2006 - to Regency Hopsital Company in Greenville South Carolina - where they do not know anything about Als and patient Care on this point I am adimit- do not ever and I mean ever take an Als patient here !!
after 3 days there she has bed sores and to this day they are worse and much more severe, They insisted that she could be weaned off of the vent - in 50 days yes they weaned her totally off of the vent - never checking blodd gases etc - In the 3rd week - her health declined and at my insistance - they checked her blood gased I remember something about 87, but thats all, they tried doing Nippy tereatments ever 4 hours, but now she is on the vent 24/7 with a rate of 12 - I blame this on there ignorance.
Tommorrow she will be taken to a facilty againts our hopes and desires, but since it is just me, I cannot possible care for her. She has movemnt in her legs, her arms and hands still function- remarkable after 80 odd days in the hopsital with no Pt - they informed me that she was not capable of doing any Pt and it was best not to do anything. I have been there every day and she can do very well with range of motion exrecises. In fact she actullay enjoys it and her limbs work better afterword.
I will be talking to the hosptal Ceo - but right now
My needs are finding caregivers or oragnizations that can assist me with donations or grants to bring here home. The state of South carolina will provide 48 hours per week of LOng Term care. But I need about another 70 or so.
This is a terrible disease and I sincerly hope treatments or cures are in gods plans.
Jimmie Cals to Nancy
DX - 08/06
Walker wheelchair - 07/06
Trach 09/06
vent 09/06
The lord has helped me carry this burden for a long time, I praise him and give him all the glory - Only God can correct the sins of man.
Jimmie
We had the peg surgery down on aug 15, 2006. Her arms and legs swelled and on the 21st of August we spent a day in the er with a possible congestive heart failure epsidode. Then on the 22nd back to Mcg for another Mri. At this time Nancy was using a walker and a wheelchair but could talk but it was pretty slurred.
On Sept 4 she had a shortness of breath feeling and was rusehd in the Easly Baptist Er. She was immedialty vented and they told me it did not look good. She was on the vent until the 16th of Sept, when they put in a trach.
She was moved on the 21st of Sept 2006 - to Regency Hopsital Company in Greenville South Carolina - where they do not know anything about Als and patient Care on this point I am adimit- do not ever and I mean ever take an Als patient here !!
after 3 days there she has bed sores and to this day they are worse and much more severe, They insisted that she could be weaned off of the vent - in 50 days yes they weaned her totally off of the vent - never checking blodd gases etc - In the 3rd week - her health declined and at my insistance - they checked her blood gased I remember something about 87, but thats all, they tried doing Nippy tereatments ever 4 hours, but now she is on the vent 24/7 with a rate of 12 - I blame this on there ignorance.
Tommorrow she will be taken to a facilty againts our hopes and desires, but since it is just me, I cannot possible care for her. She has movemnt in her legs, her arms and hands still function- remarkable after 80 odd days in the hopsital with no Pt - they informed me that she was not capable of doing any Pt and it was best not to do anything. I have been there every day and she can do very well with range of motion exrecises. In fact she actullay enjoys it and her limbs work better afterword.
I will be talking to the hosptal Ceo - but right now
My needs are finding caregivers or oragnizations that can assist me with donations or grants to bring here home. The state of South carolina will provide 48 hours per week of LOng Term care. But I need about another 70 or so.
This is a terrible disease and I sincerly hope treatments or cures are in gods plans.
Jimmie Cals to Nancy
DX - 08/06
Walker wheelchair - 07/06
Trach 09/06
vent 09/06
The lord has helped me carry this burden for a long time, I praise him and give him all the glory - Only God can correct the sins of man.
Jimmie