Hi Amber,
Hang in there with the nursing situation. The system just doesn't understand
how difficult it is for parents of children with medical problems. My daughter
is almost 26 months old now. Actually she is my foster daughter but I've been
with her from the beginning so in my heart she is mine. I can't adopt her
because I will be cut off from the financial assistance so I understand your
frustrations. My daughter spent the first 15 months in the hospital. She was
premature weighing 1.5 lbs at birth. After her surgery for her G tube she went
downhill. She quit breathing which required her to be trached. This was at 3
months of age and has been vent dependent ever since. She has chronic lung
disease which has caused stress on her heart, kidneys and brain. My problem with
the nursing situation is I live in a rural area and can't get nurses to come to
my house. I am approved for 24 hour care but I'm lucky to have a nurse 1 day a
week. If it weren't for the friends(nurses) I made up at
the hospital I wouldn't even have that. My nurses are the ones that took care
of her while at the hospital. We bonded and they come to my house on their time
off. If there is anything I can do just ask. I have 3 other children at home
and its been a challenge. Take care and good luck.

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







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