Hi Laura,
Ok I gotta say you gave me a good laugh! We have
one of the best pedes I can imagine and she s gone to
bat several times on this issue and lost. However she
also went to bat on getting a canopy bed for our kids!
Get this.. they approved our son! Denied our daughter!
Now explain that one to me???? Their claim being she
is not able to easily move from place to place and our
son is?? Actually its the opposite! Sometimes I really
have to shake my head at this system!
We keep in contact isolation thru the winter
months as much as possible but I fear with having the
kids therapists in and out that I wont be able to
shield them enough. Every other time they actually
caught RSV was from being admitted to the hospital for
another issue... or surgery... and then contracting it
while in there! Gotta love nosacomial infections huh?
I ll see what I can do once again. Our kids are
small so the cost is still the same as your typical 1
yr olds.. they only weigh 22 and 28 lbs so I dont
think its that. I think it is simply getting the
insurance company to approve based on cost
effectiveness for them. We just had to go to bat for
Caffeine again to keep our son off a vent.. helicopter
ride in respitory arrest seemed to do the trick to get
that approval! We called the next day and said either
pay the 2,000 a month for the caffeine or else every
time he stops breathing he ll be on the helicopter and
pay for that one! Amazing how their minds work!
I'm curious... just off hand.. how portable is
your vent? Are you able to still take your daughter
out with you with the vent? We are considering a
surgery that has a VERY high risk of putting our 5 yr
old back on a vent... we adopted her being told she
was still vented.. showed up and no vent! Gotta love
that lack on info there. She was vented 4.5 yrs but
been off for over a year now... surgery will move the
muscles to cover an abdominal defect and they arent
sure how she s breathing now. So moving them might put
her back on the vent. So I thought Id toss a few
questions off you. She can crawl quickly... pulls to
stand and is walking with a walker now and took a few
steps. So Im wondering what life would be like with a
vent for her? Any suggestions.. ideas?

Kimberley

--- Laura <tbnkatie@...> wrote:

> --- In Mito@yahoogroups.com, Kimberley Kretzmer
> <kkretzmer@y...> wrote:
> >
> >
> > Hi Laura,
> > I would LOVE to find out how you managed to get
> it
> > approved!
>
> Well, the thing is our katie was born at 22 4/7
> weeks. That made it easy to get approval
> for her first few years. The fall she was 3 1/2, she
> didn't get Synagis. She was hospitalized
> for two weeks and nearly died. Was on oxygen for
> months. Actually, she just came off lasix
> she'd had since the RSV (three years ago). She was
> able to get synagis without a whole
> bunch of fuss after that. She didn't get it last
> year. But...she takes daily antibiotics and I
> think that keeping bacterial infections away has
> helped her resistance to the RSV. If she
> was to get it again, though, I think she'd never get
> rid of a vent. She hypoventilates during
> the best of times.
>
> In IL, the vent clinic considers Synagis necessary
> for RSV prevention. They went to bat with
> IL medicaid and it now covers synagis for IL
> medicaid patients on vents. I know that
> Wisconsin, which has a much better program overall,
> doesn't consider this as necessary as
> the vent clinic in central IL. It's probably very
> much a regional thing.
>
> I do know that getting down on the floor at the
> pedi's office and throwing a hissy fit helps
> somewhat. They really want you out of the office
> pretty quickly. :-)
>
>
>
>
> > Laura
> > >
> > > Mom to the two best kids in the world!
> > > http://www.caringbridge.org/visit/thomasandkatie
>
>
>
>
>





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