Hang in there Tom
Michael Chambers (mchamber@postoffice.ptd.net)
Tue, 27 Feb 1996 23:12:54 -0800
Just hold on to anything you can find, it's a hell of a ride. The NICU
nurses kept telling me it was a roller coaster ride. After 4 months it
was a lot of downs with few up, but what can you do but stay possitive.
I took the full ride, started 12/19/94, Andrew was born at 29 weeks
c-section. I still remember walking into the NICU the first time, talk
about scard, I use to pass-out at the sight of blood(by the why I gave 3
units, and his mother gave 1 before he was 4 mo. old). He started strong
only 6 hrs on the vent.The first three days went well as things go, you
know, you can't hold him, the tubes, the monitors, just your basic NICU
setting. Then 2 days before Christmas the sky fell, blood work showed a
chromosome abnormality, they could not tell us exactly, but it could mean
a number of nightmares(mental and phy. retardation, life span of 20-30,
the list went on and on), but it would take 3 weeks to sort it all out.
Turns out it was nothing, Andrews 9th chromosome matches mine exactly(
and I'm reasonable normial, I think). As if this was not enough Christmas
morning an infection flaired and he was put on O2, went from a cannula to
CPAP, and all most constant spells of apnea,(the works)after about 3 days
things did slowly improve.During the next 2 months we went through it
all, mild retinopathy, chronic lung disease, the cat scans,
ultrasounds,weight gains, weight losses, then it happened after only 2
months we came home, O2 tanks, monitors, and all the meds. Lasted 4 days,
and we were back in the hospital with resp. distress. Dozens of tests
later they thought they found a heart defect, so we were transfered to
Hershey Medical Center (a teaching hospital, this I will expand on some
other time). They found not heart problems, but he did pick-up a Flu bug,
and landed in there PICU in only 3 days on a vent.That lasted for almost
3 weeks untill I could be him transfered back to Polyclinic where he was
born. They told use he probibly would not make it for the first week,
they tried everything, he had the vent. settings maxed out. Then it
happened bit by bit he started picking up ground. After 31 days on the
vent. he extubated himself twice, and they quit trying to put it back in,
and after a few weeks in an O2 tent, he was back on a cannula. Came home
at last on Easter 95, still toting the O2, apnea monitor, pulseox
monitor, and all the meds, but we were home, ( I thought I lost a lot of
sleep while he was in the hospital, that first week at home I don't think
I slept). We did well through the summer, although feeding had become a
problem since the vent., 4 days back in Hershey resulted in a diagnoses
of reflex(Andrew was on NG feedings since the vent.), so add more meds.
Jan. brought the much feared RSV. almost lost him, and spent most of the
month in the hospital, but we came through it. Today were still on O2 ,
feeding are NJ now ( still talking about surgery
for a nissen wrap, and G tube)breathing treatment 4 time a day,and all
the meds, but 14 months old and 17lbs. ain't so bad for all we have been
through.
Tom I wish that there was something I could offer you to make it easier,
for me I tried to hold on to what was before me, my son, and nothing
ahead of us could take away that monent, We live today and hope (and pray
if it is your way) for tommorow.
I look forward to hearing good news in the near future.
Michael Chambers
mchamber@postoffice.ptd.net