My son was born may 1st 2001 and he was 25 weeks he did really good in
the beginning of the nicu but he had to have eye surgey what cause
him to get stroyder whish lead to a trach in september he came home 2
weeks after surgey for the very first time and we though we could do
it all that a week and a half later he was back in the picu he came
home again after a 3 day stay and stayed home for 3 days than back to
the picu than home for a few days and back to the picu thanhome for a
few days than back to the picu where he still is doing fine but know
they won't send him home until he has a nurse to look after him so we
are fighting with the ins company to see if they will pay for that.
Has anyone felt or had this frustain in all this..
- Hi, Bren
There are hospital personnel who may be able to help you convince the
insurance company that it will be much cheaper for them to provide in-home
nursing care for your son than to pay to keep him in the hospital.
See if you can get the social services department of the hospital to help
you. (It may be called something different at that hospital, but keep asking
for help until you get some!)
And you may want to ask the doctors to re-evaluate whether or not your little
one is actually breathing enough, especially while he is sleeping. Sometimes
babies who have trouble breathing get really tired out from the effort. You
can ask them to measure his "end tidal carbon dioxide" or "end-tidal CO 2".
It's almost as simple to do as measuring his oxygen saturation or "O 2" with
Even with nurses helping at home, taking care of a medically-fragile baby at
home is difficult. Sheesh, just taking care of any baby is tiring. I hope
you have supportive family and friends to help you.
I'm glad your baby has you to fight for him! What's his name? How big is he
Mom to: Shelly (wants to be queen, shoulda seen her on Halloween!, NM,
ventilator dependent, tracheostomy, J-tube fed, wheelchair, etc.); Lindsey
(mastering that communication device, anything for a strawberry shake!, CP,
seizures, tracheostomy, wheelchair, etc.); Jake (beginning to use those
hands, you should see that feeding pump fly!, CP, ventilator dependent,
tracheostomy, G-tube fed, wheelchair, etc.); Justin (bright and beautiful, a
steady girlfriend!, cleft lip/palate, seizures, ADHD, sensorimotor
differences); Molly (superb athlete, state soccer champs!, limb differences,
speech prots. (And, Yes, we have some nursing help, thank goodness.)