Any advice on how I can help

M

Mommafirst

Guest
I have an online friend I met on another board. Her son is 10 months and has CF. We've been through the whole diagnosis process together, even though we live on opposite ends of the country. Anyway, he's being treated for the pneumonia with TOBI every two hours all day and all night. My friend is exhausted. She has no help. I can hear her dispair in her voice and I sooo want to find something to help her, but I am so new to this CF world, that I can't think of anything. If I lived closer I'd go over and take over some treatments so that she could get a break. Or something.

She was trying to get him admitted so that the RT could do the treatments and she could just be there with him and comfort him, instead of feeling like she is torturing him every two hours. Thus far, though, there are no beds in their hospital. Its RSV season and the hospital has strict rules about how close CF patients can be to RSV patients (good thing) but they just won't admit him.

Does any one have any suggestions for her or for me to help her????

Thanks in advance!!!
 
M

Mommafirst

Guest
I have an online friend I met on another board. Her son is 10 months and has CF. We've been through the whole diagnosis process together, even though we live on opposite ends of the country. Anyway, he's being treated for the pneumonia with TOBI every two hours all day and all night. My friend is exhausted. She has no help. I can hear her dispair in her voice and I sooo want to find something to help her, but I am so new to this CF world, that I can't think of anything. If I lived closer I'd go over and take over some treatments so that she could get a break. Or something.

She was trying to get him admitted so that the RT could do the treatments and she could just be there with him and comfort him, instead of feeling like she is torturing him every two hours. Thus far, though, there are no beds in their hospital. Its RSV season and the hospital has strict rules about how close CF patients can be to RSV patients (good thing) but they just won't admit him.

Does any one have any suggestions for her or for me to help her????

Thanks in advance!!!
 
M

Mommafirst

Guest
I have an online friend I met on another board. Her son is 10 months and has CF. We've been through the whole diagnosis process together, even though we live on opposite ends of the country. Anyway, he's being treated for the pneumonia with TOBI every two hours all day and all night. My friend is exhausted. She has no help. I can hear her dispair in her voice and I sooo want to find something to help her, but I am so new to this CF world, that I can't think of anything. If I lived closer I'd go over and take over some treatments so that she could get a break. Or something.

She was trying to get him admitted so that the RT could do the treatments and she could just be there with him and comfort him, instead of feeling like she is torturing him every two hours. Thus far, though, there are no beds in their hospital. Its RSV season and the hospital has strict rules about how close CF patients can be to RSV patients (good thing) but they just won't admit him.

Does any one have any suggestions for her or for me to help her????

Thanks in advance!!!
 
E

Emily65Roses

New member
I don't suppose she has any friends or family nearby that she can recruit to help her a bit? What about the baby's father? Why isn't he helping?
 
E

Emily65Roses

New member
I don't suppose she has any friends or family nearby that she can recruit to help her a bit? What about the baby's father? Why isn't he helping?
 
E

Emily65Roses

New member
I don't suppose she has any friends or family nearby that she can recruit to help her a bit? What about the baby's father? Why isn't he helping?
 
M

Mommafirst

Guest
She lives with the baby's father and her mom and neither are helping her. Don't even get me started on either of them. Apparently the father keeps saying he can't be up all night because he goes to work and her mom can't "handle it". I'd love to yell my head off at them, but I can't.
 
M

Mommafirst

Guest
She lives with the baby's father and her mom and neither are helping her. Don't even get me started on either of them. Apparently the father keeps saying he can't be up all night because he goes to work and her mom can't "handle it". I'd love to yell my head off at them, but I can't.
 
M

Mommafirst

Guest
She lives with the baby's father and her mom and neither are helping her. Don't even get me started on either of them. Apparently the father keeps saying he can't be up all night because he goes to work and her mom can't "handle it". I'd love to yell my head off at them, but I can't.
 
E

Emily65Roses

New member
Then I don't have a single suggestion. She needs to tell her family not to be such selfish jack@sses. I can understand the father's statement... but not for weekends. He should be helping her, she shouldn't be doing this alone. And her mother can't handle it??? Then she shouldn't be living with them and being such a useless lump.
 
E

Emily65Roses

New member
Then I don't have a single suggestion. She needs to tell her family not to be such selfish jack@sses. I can understand the father's statement... but not for weekends. He should be helping her, she shouldn't be doing this alone. And her mother can't handle it??? Then she shouldn't be living with them and being such a useless lump.
 
E

Emily65Roses

New member
Then I don't have a single suggestion. She needs to tell her family not to be such selfish jack@sses. I can understand the father's statement... but not for weekends. He should be helping her, she shouldn't be doing this alone. And her mother can't handle it??? Then she shouldn't be living with them and being such a useless lump.
 
L

Liamsmommy

New member
Does the US have anything like respit care??? My 2 year old gets respite care every week for 3 hours a nurse come into look after her and its paid by the gvernment and then they have also given me a "Alowance" to hire someone on my own to come and give me a break. Our respit hours increce when something like what your friend is going through happens. they increase it to 8 hours per day or night
I dont know if that helps but its something to look into?

Hope she finds help

Shawna
 
L

Liamsmommy

New member
Does the US have anything like respit care??? My 2 year old gets respite care every week for 3 hours a nurse come into look after her and its paid by the gvernment and then they have also given me a "Alowance" to hire someone on my own to come and give me a break. Our respit hours increce when something like what your friend is going through happens. they increase it to 8 hours per day or night
I dont know if that helps but its something to look into?

Hope she finds help

Shawna
 
L

Liamsmommy

New member
Does the US have anything like respit care??? My 2 year old gets respite care every week for 3 hours a nurse come into look after her and its paid by the gvernment and then they have also given me a "Alowance" to hire someone on my own to come and give me a break. Our respit hours increce when something like what your friend is going through happens. they increase it to 8 hours per day or night
I dont know if that helps but its something to look into?

Hope she finds help

Shawna
 
M

Mommafirst

Guest
I don't know if we have it, but I'll tell her to ask her CF nurse and maybe the social worker can help set that up. Thank you, this is the kind of thing I came to this site for -- I know nothing about anything like this, I don't even have the language yet to give her direction. And I'm prettysure she doesn't either yet.
 
M

Mommafirst

Guest
I don't know if we have it, but I'll tell her to ask her CF nurse and maybe the social worker can help set that up. Thank you, this is the kind of thing I came to this site for -- I know nothing about anything like this, I don't even have the language yet to give her direction. And I'm prettysure she doesn't either yet.
 
M

Mommafirst

Guest
I don't know if we have it, but I'll tell her to ask her CF nurse and maybe the social worker can help set that up. Thank you, this is the kind of thing I came to this site for -- I know nothing about anything like this, I don't even have the language yet to give her direction. And I'm prettysure she doesn't either yet.
 
K

Keirasmom

New member
Hi Heather,
We have a state funded program called Quality Life Concepts. I believe every state has something like it. All children with a disability qualify and are paid through the state and they have respite care. I would also check with the hospital or with the CF clinic to have outpatient help. My doctor said told us she would get us shots etc. at our house if our daughter was sick.
I hope that helps.
 
K

Keirasmom

New member
Hi Heather,
We have a state funded program called Quality Life Concepts. I believe every state has something like it. All children with a disability qualify and are paid through the state and they have respite care. I would also check with the hospital or with the CF clinic to have outpatient help. My doctor said told us she would get us shots etc. at our house if our daughter was sick.
I hope that helps.
 
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