first post

January 27, 2003

I have not posted here before, but last year I occasionally posted on the

Cystic-L group. My son is 17 mos. old and was diagnosed at 3 mos. He is unique

here in Columbus (as far as I know) because he is biracial (black & white). He

has great doctors, but I guess I don't really know this because I still find out

so many things by reading others' stories. He has been in the hospital 9 times

since his diagnosi and we've only been out 3 mos currently. He had been lucky

enough to attend a daycare through Children's Hospital that also has registered

nurses. My Home HEalth Care benefir through work was covering the nursing hours,

but once again my health insurance is denying the claim. Now we are stuck with

trying to find child care and work in his aersol meds and CPTs. He receive 4

treatments a day with 4 thumpings. How do I find healthcare for him during the

day if I can't find a chilld care provider who will allow a nurse to come into

their place? I am so frustrated because he needs child care so I can work and

trained (nursing) care for his meds and physical therapy. I am so scared he will

get sick again with out the daily nursing care to keep his dad and I aware of

his condition!!!

If anyone has any suggestions please let me

know!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Mom of chas wcf

January 27, 2003

Have you considered hiring an individual to come into your home to

babysit or taking him to a sitter's home? Anyone can learn to do the

meds and cpt. There are videos that show how to do it, or take the

sitter to the next clinic visit and have the respiratory therapist go

over it.

I would be more concerned about what germs he would be exposed to in

any daycare environment, but that's just me. I'm also paranoid about

taking my son with cf to hospitals - after all, that's where they

keep contagious people.

Of course, you can appeal the insurance company's decision to deny

the claim. Read your policy to find the steps needed to send a claim

to review. You might be able to get the coverage for services after

all.

Good luck!

~

mommy to 3, 1 with cf

> He had been lucky enough to attend a daycare through Children's

Hospital that also has registered nurses. My Home HEalth Care benefir

through work was covering the nursing hours, but once again my health

insurance is denying the claim. Now we are stuck with trying to find

child care and work in his aersol meds and CPTs. He receive 4

treatments a day with 4 thumpings. How do I find healthcare for him

during the day if I can't find a chilld care provider who will allow

a nurse to come into their place> If anyone has any suggestions

please let me know!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

>

> Mom of chas wcf

January 28, 2003

I don't know your situation, but if I were you, I would find some way for

you or your husband to stay home with him. If he is as sick as it sounds,

needing 4 cpts a day, he needs to be at home.

Just my opinion.

Angie

first post

> I have not posted here before, but last year I occasionally posted on the

Cystic-L group. My son is 17 mos. old and was diagnosed at 3 mos. He is

unique here in Columbus (as far as I know) because he is biracial (black &

white). He has great doctors, but I guess I don't really know this because I

still find out so many things by reading others' stories. He has been in

the hospital 9 times since his diagnosi and we've only been out 3 mos

currently. He had been lucky enough to attend a daycare through Children's

Hospital that also has registered nurses. My Home HEalth Care benefir

through work was covering the nursing hours, but once again my health

insurance is denying the claim. Now we are stuck with trying to find child

care and work in his aersol meds and CPTs. He receive 4 treatments a day

with 4 thumpings. How do I find healthcare for him during the day if I can't

find a chilld care provider who will allow a nurse to come into their place?

I am so frustrated because he needs child care so I can work and trained

(nursing) care for his meds and physical therapy. I am so scared he will get

sick again with out the daily nursing care to keep his dad and I aware of

his condition!!!

>

> If anyone has any suggestions please let me

know!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

>

> Mom of chas wcf

>

January 28, 2003

His dad stays home with him during the day now because he works third shift. I

guess I am still unsure to decide how " sick " he is. The doctors say his lings

look good and that most of his hospitalizations have been due to asthma and

getting his meds right. Every we go to clinics they say his lungs sound clear,

but I am always so uptight about him getting sick. It seem like his doing well

for a couple of months and then he gets sick again. His last clinic visit (about

2 weeks ago) was ok, but they said his weight gain is poor. He weighs 21lbs and

is only 29 " . His proportioned, but they say it's not enough! He also aspirates

and is on thicken feeds. I guess I am just rambling because I am so scared and

nervous about keeping him healthy. Like I said his dad is trying to watch him,

but he is not getting enough sleep and I have two other children who are home in

the evening which makes sleep impossible!!!! I guess I am frustrated and trying

to figure out what's best. We need to both work because money is so tight, but

our son does need good care and it is hard to get that when he needs physical

care that we can't get without help from my insurance. I will file an appeal!

Anyways, thanks for reading to anyone out there that didn't get annoyed with all

this rambling!!!!

Mom of Chas wcf