sasywtch
DIS Veteran
- Joined
- May 16, 2008
Just thought I'd do an update on my daughter as I'm waiting for clothes to dry to go out to see her.
For those who don't know/remember, she was paralyzed 7/11/17 due to a rare condition, infarction of the spine.
Her heart restrictions were up on 10/11 so got to start physical therapy on 10/12. They are trying to get her stomach muscles going. Her calf muscles are shrinking quite a bit. She probably will need a movable wheelchair that reclines and stretches her legs out as circulation to her feet are poor. When they do sit her up in a recliner with feet down, they turn beet red.
I've had some issues with the SNF. A night CNA changed her catheter bag. The next morning the day CNA noticed urine and blood on the bed. It appears her catheter came out with the balloon which was still inflated. My dil who is an RN said it's great she couldn't feel because that would have hurt badly. Not being a nurse, I had no idea they kept it up there with an inflated balloon.
My daughter's whole world is on that little tray they use to feed you. She has her phone, kindle, magazine, condiment container (food is bad so she has packets of catsup, honey, etc). She woke up with her breakfast tray but all her stuff was gone. She called the CNA, the CNA said if you want your stuff back, then you don't want your breakfast and took her food away. Then the CNA stood out in the hallway talking about it with another CNA for 20 minutes while my daughter had her light on. That did not sit well with me. You don't use control with food for people who can't get out of bed. I filed a complaint with Dignity Health. If she does this to my daughter who is sound of mind, how does she treat others who can't speak etc. All other CNA's have put the tray on there.
They get their food shipped over from the hospital next door. Twice, the meatloaf has been raw in the middle. It's pink and you can see raw hamburger. The CNA that came back even said yuk and asked her if she wanted a sandwich. I took some in a cup and went to visit the café in the hospital. The manager said it is pink but it's cooked. I picked out the raw part and put it in her hand and said, this is not cooked. She asked me if I wanted to take something over to my daughter so I picked out some fruit and oj since she has a cold. I dont' expect wonderful food in a hospital but I do expect it to be cooked and not raw. When I came back, I could see a lot of trays in the hall with 3/4 of the meatloaf still there.
We have let a lot of things go, including the catheter, not moving her every two hours, etc in fear of retaliation (they have threatened to move her to a less desirable wing where people scream and yell) etc. It's a fine line you have to walk.
I have not found a place to live. My lease is running out soon. It sucks that there isn't any state or county help for those newly disabled. Lots of help for other things, those never worked, those newly to the country, etc but for those who have worked all their lives, it's difficult. I have a mentor through the Christopher Reeve foundation. They are fighting for more rights for the disabled but right now, it's now there. It's stressful. I'd like to see her come home. They were suggesting a board and care. I've known quads who came home so no reason why she couldn't come home.
There are resources After she gets home but the tricky thing is, they don't tell you until she is home. I don't know how one can plan. But it's something so I'm not complaining. The county has a program that pays $10 an hour for inhome care to do basics, shower, clean, cook, change catheter bags, etc. You can't apply until two weeks before release and then they will determine if she qualifies and how many hours. So I'm trying to decide if I should go back to work, how many hours I can work, etc. We need more money in our household as I'm going through the small inheritance I got. It's difficult to plan but rents are going sky high here. They are raising my rent 300 a month in December. My friend's sister has issues (I have never asked the diagnosis) but she can't be by herself for long. She was allotted 160 hours a month to care for her.
So that's what's going on. My 12 year old grandson has scarlet fever. I was around him Saturday when he had a fever and rash and thought it was fifth's disease. Counting the days to make sure I and my other daughter didn't get it. Now my dil is asking me to babysit on Saturday. She just sent pics. His rash looks terrible.
Have a good rest of the day everyone
For those who don't know/remember, she was paralyzed 7/11/17 due to a rare condition, infarction of the spine.
Her heart restrictions were up on 10/11 so got to start physical therapy on 10/12. They are trying to get her stomach muscles going. Her calf muscles are shrinking quite a bit. She probably will need a movable wheelchair that reclines and stretches her legs out as circulation to her feet are poor. When they do sit her up in a recliner with feet down, they turn beet red.
I've had some issues with the SNF. A night CNA changed her catheter bag. The next morning the day CNA noticed urine and blood on the bed. It appears her catheter came out with the balloon which was still inflated. My dil who is an RN said it's great she couldn't feel because that would have hurt badly. Not being a nurse, I had no idea they kept it up there with an inflated balloon.
My daughter's whole world is on that little tray they use to feed you. She has her phone, kindle, magazine, condiment container (food is bad so she has packets of catsup, honey, etc). She woke up with her breakfast tray but all her stuff was gone. She called the CNA, the CNA said if you want your stuff back, then you don't want your breakfast and took her food away. Then the CNA stood out in the hallway talking about it with another CNA for 20 minutes while my daughter had her light on. That did not sit well with me. You don't use control with food for people who can't get out of bed. I filed a complaint with Dignity Health. If she does this to my daughter who is sound of mind, how does she treat others who can't speak etc. All other CNA's have put the tray on there.
They get their food shipped over from the hospital next door. Twice, the meatloaf has been raw in the middle. It's pink and you can see raw hamburger. The CNA that came back even said yuk and asked her if she wanted a sandwich. I took some in a cup and went to visit the café in the hospital. The manager said it is pink but it's cooked. I picked out the raw part and put it in her hand and said, this is not cooked. She asked me if I wanted to take something over to my daughter so I picked out some fruit and oj since she has a cold. I dont' expect wonderful food in a hospital but I do expect it to be cooked and not raw. When I came back, I could see a lot of trays in the hall with 3/4 of the meatloaf still there.
We have let a lot of things go, including the catheter, not moving her every two hours, etc in fear of retaliation (they have threatened to move her to a less desirable wing where people scream and yell) etc. It's a fine line you have to walk.
I have not found a place to live. My lease is running out soon. It sucks that there isn't any state or county help for those newly disabled. Lots of help for other things, those never worked, those newly to the country, etc but for those who have worked all their lives, it's difficult. I have a mentor through the Christopher Reeve foundation. They are fighting for more rights for the disabled but right now, it's now there. It's stressful. I'd like to see her come home. They were suggesting a board and care. I've known quads who came home so no reason why she couldn't come home.
There are resources After she gets home but the tricky thing is, they don't tell you until she is home. I don't know how one can plan. But it's something so I'm not complaining. The county has a program that pays $10 an hour for inhome care to do basics, shower, clean, cook, change catheter bags, etc. You can't apply until two weeks before release and then they will determine if she qualifies and how many hours. So I'm trying to decide if I should go back to work, how many hours I can work, etc. We need more money in our household as I'm going through the small inheritance I got. It's difficult to plan but rents are going sky high here. They are raising my rent 300 a month in December. My friend's sister has issues (I have never asked the diagnosis) but she can't be by herself for long. She was allotted 160 hours a month to care for her.
So that's what's going on. My 12 year old grandson has scarlet fever. I was around him Saturday when he had a fever and rash and thought it was fifth's disease. Counting the days to make sure I and my other daughter didn't get it. Now my dil is asking me to babysit on Saturday. She just sent pics. His rash looks terrible.
Have a good rest of the day everyone
Sending good wishes!!
