T
Terry
Guest
I posted this in the teenager section hoping for some advice from someone closer to Marissa's age. I'm posting it hear hoping to hear from someone who might be going through this or remember having done it themselves.
Hi Everyone,
I have a 9 going on 10 year old step-daughter who has CF. She has to do 3 albuterol nebs, 1 pulmozyme neb, use her vest 3 times a day (20 minutes each), and has a feeding pump at night. She also takes enzymes, vitamins, and prevacid. Finally, she uses a Flovent inhaler morning and night.
None of her equipment is in bad shape (YET). None of it is the same age, as we replace each piece as it shows signs of wearing down. In fact, all of it has been replaced within the last 6 months. So there shouldn't be any reason "mechanically" for all three machines to be acting up at once.
A little background info, she wasn't diagnosed until she was 4 years old. For the next two years her grandmother lived in the house with her and her father and was the med police. The grandmother moved out, and for 9 months it was just her and her father.
She, like any little girl, had her dad wrapped around her little finger, and would beg to have a "break" from her treatments, and for several months managed to con him into only doing the ihalers and her pills. In I walk 2 1/2 years ago.
The first two weeks I was here, I would ask WHEN is she going to do her meds, and she would cry, and he would say we'll start tomorrow. She couldn't walk accross the room without having a coughing spell, was so skinny her backbone stuck out, and was battling one infection after another.
On the 2 week mark he went to bed early, and I had my eldest daughter show me how all the machines worked, and she restarted her meds and feedings, all the while protesting. In the morning she cried when we were to begin the morning routine, her father seemed to be falling for it, and I invited him to go outside with me for a "chat."
I told him that it was my opinion that what he was doing (or not doing), although he was doing it out of love for her, was neglectful, and I would not stay here if she wasn't going to be properly cared for. He decided to side with me, and we agreed to treat everything as matter of fact, in the same way we would react to her not brushing her teeth.
Okay, now the present...suddenly Marissa's feeding tube had stopped "working," and she would wake up with almost a full bag of food. I had a feeling she was turning it off. After about a week of it "malfunctioning," I had her stay on it after she woke up during the day on a Saturday so I could see it shut off by itself. I had already tested it one day while she was at school by filling the bag with water, and letting it pump into the tub, so I knew it was in working order. Needless to say, the pump finished her feeding without an incident. I told her that if it didn't finish feeding her at night, she would have to stay on it until it finished in the day from here on out. She didn't like that too much, and somehow the pump has managed to repair itself.
Then she started "hiding" her pills and "forgetting to take them. I knew we were on a road for trouble cause she had not as of yet had a problem with taking the pills. That we corrected okay, we just started hovering over her until they were all taken again.
This month the vest has decided to "come apart" every 2 minutes while she is on it. I see her yank the hoses, and also try to keep the vest off her chest by pulling on it. And the nebulizer has "sprouted wings" and falls off the table, but ends up halfway across the room. The nebulizer sits on the same table that it has for the past year. About a month ago we had to replace her neb because it flew across the room and broke, ever since it won't stop flying. We have resorted to having her put the neb on the floor a the beginning of her treatments, but I am not so sure it should be on the floor. It is more of a pick your battles sort of thing. We are getting ready to duct tape her vest together, as there is no way she is properly getting PT having to keep putting the hoses back in. FYI, it is not one particular part of the hose coming out, it is
all 4 attachment areas, just not at the same time.
I know this was long, and I apologize. I know she must be angry, but how would you suggest we handle this??? Oh, as all of this started, she first started arguing about doing the treatments. Her mother had taken her to Ocean City, and she got away with not doing most of her treatments, and tried to get away with it here.
I hate being seen as the med-nazi or the horrible stepmother, but I have seen her health improve drastically with adhering to her med schedule. Unfortunately, it seems I am the one who stands up to all the kids.
I am ready for you all to shoot me for being "insensitive." Trust me, I already feel that way when she is crying and I don't give in, but I am "insensitive" because I know how quickly she goes downhill. She was in horrible shape after only 1 week in OC. At diagnosis her father was told she would probably not make it past 9 years old, which I think is why he hated making her sit in the chair when she wanted to run and play. She is very healthy now after doing ALL her treatments for 2 1/2 years.
Thanks for anything you can think of to help...
Terry
Hi Everyone,
I have a 9 going on 10 year old step-daughter who has CF. She has to do 3 albuterol nebs, 1 pulmozyme neb, use her vest 3 times a day (20 minutes each), and has a feeding pump at night. She also takes enzymes, vitamins, and prevacid. Finally, she uses a Flovent inhaler morning and night.
None of her equipment is in bad shape (YET). None of it is the same age, as we replace each piece as it shows signs of wearing down. In fact, all of it has been replaced within the last 6 months. So there shouldn't be any reason "mechanically" for all three machines to be acting up at once.
A little background info, she wasn't diagnosed until she was 4 years old. For the next two years her grandmother lived in the house with her and her father and was the med police. The grandmother moved out, and for 9 months it was just her and her father.
She, like any little girl, had her dad wrapped around her little finger, and would beg to have a "break" from her treatments, and for several months managed to con him into only doing the ihalers and her pills. In I walk 2 1/2 years ago.
The first two weeks I was here, I would ask WHEN is she going to do her meds, and she would cry, and he would say we'll start tomorrow. She couldn't walk accross the room without having a coughing spell, was so skinny her backbone stuck out, and was battling one infection after another.
On the 2 week mark he went to bed early, and I had my eldest daughter show me how all the machines worked, and she restarted her meds and feedings, all the while protesting. In the morning she cried when we were to begin the morning routine, her father seemed to be falling for it, and I invited him to go outside with me for a "chat."
I told him that it was my opinion that what he was doing (or not doing), although he was doing it out of love for her, was neglectful, and I would not stay here if she wasn't going to be properly cared for. He decided to side with me, and we agreed to treat everything as matter of fact, in the same way we would react to her not brushing her teeth.
Okay, now the present...suddenly Marissa's feeding tube had stopped "working," and she would wake up with almost a full bag of food. I had a feeling she was turning it off. After about a week of it "malfunctioning," I had her stay on it after she woke up during the day on a Saturday so I could see it shut off by itself. I had already tested it one day while she was at school by filling the bag with water, and letting it pump into the tub, so I knew it was in working order. Needless to say, the pump finished her feeding without an incident. I told her that if it didn't finish feeding her at night, she would have to stay on it until it finished in the day from here on out. She didn't like that too much, and somehow the pump has managed to repair itself.
Then she started "hiding" her pills and "forgetting to take them. I knew we were on a road for trouble cause she had not as of yet had a problem with taking the pills. That we corrected okay, we just started hovering over her until they were all taken again.
This month the vest has decided to "come apart" every 2 minutes while she is on it. I see her yank the hoses, and also try to keep the vest off her chest by pulling on it. And the nebulizer has "sprouted wings" and falls off the table, but ends up halfway across the room. The nebulizer sits on the same table that it has for the past year. About a month ago we had to replace her neb because it flew across the room and broke, ever since it won't stop flying. We have resorted to having her put the neb on the floor a the beginning of her treatments, but I am not so sure it should be on the floor. It is more of a pick your battles sort of thing. We are getting ready to duct tape her vest together, as there is no way she is properly getting PT having to keep putting the hoses back in. FYI, it is not one particular part of the hose coming out, it is
all 4 attachment areas, just not at the same time.
I know this was long, and I apologize. I know she must be angry, but how would you suggest we handle this??? Oh, as all of this started, she first started arguing about doing the treatments. Her mother had taken her to Ocean City, and she got away with not doing most of her treatments, and tried to get away with it here.
I hate being seen as the med-nazi or the horrible stepmother, but I have seen her health improve drastically with adhering to her med schedule. Unfortunately, it seems I am the one who stands up to all the kids.
I am ready for you all to shoot me for being "insensitive." Trust me, I already feel that way when she is crying and I don't give in, but I am "insensitive" because I know how quickly she goes downhill. She was in horrible shape after only 1 week in OC. At diagnosis her father was told she would probably not make it past 9 years old, which I think is why he hated making her sit in the chair when she wanted to run and play. She is very healthy now after doing ALL her treatments for 2 1/2 years.
Thanks for anything you can think of to help...
Terry