--- In ventilatorkids@yahoogroups.com, "Amber" <always_adorable@...>
wrote:
>
> HI everyone my name is Amber, I have a 4 month old son, Landon,
that
> is vent dependent due to central apnea, he has micrognathia which
is
> originally why he had to be trached, he also has a G-J tube because
he
> doesnt know how to swallow. He has hydrocephalus and will be
getting
> his first shunt next week. He also has agenisis of the corpus
> callosum. He has many other little things wrong with him also. He
is
> still in the hospital but finally out of NICU. Our biggest problem
> right now is that our insurance doesnt want to give us in home
> nursing. If anybody wants to chat feel free to e-mail me. Thanks,
> Amber
>
Hi Amber, I'm Miranda, and like you my son is also 4 mos old but
still in the NICU. I've read some of your posts and I just wanted to
tell you I'm def. praying for you guys. My son is on a vent. he's
gong to come home with one, though he doesnt need a g-tube, he has
high blood pressure, rickets, and chronic lung disease or BPD as its
also called. I had him at 26 wks gest. and no one said it was going
to be this hard, of course i dont know anyone who's going through
this personally. Was your son a premie also? When you get a chance
lets email i would love to know how your sons surgery came out! god
bless you and your family,esp your son!