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It was about 2 weeks after her 1st birthday when Jennifer
became sick with croup. She was up all night crying and very restless
when she did get some sleep. She had very little to eat and had
been running a temperature of about 101 to 102.
It was Monday morning and I knew it was time to go
to the doctors so I called in sick to work at about 7am. By 7:30
I realized Jennifer couldn't even crawl across the floor anymore.
I knew she was REAL sick. I figured they would tell me she had pneumonia
or bronchitis. Boy! To my big surprise by the time I got her to
the Dr's office she was lethargic, like a dishrag just laying on
me! The nurse practitioner took one look at her and told me to immediately
get her to the ER and they would do stat testing on her.
We live in a rural area in Missouri and the nearest
hospital is about 30 minutes away. By the time my husband and I
got her to the ER she was in a coma with a blood sugar of 20. She
was not responding to any of the needle sticks when they took lab
work. They did a chest x-ray to see if there was any respiratory
infection. As this was done I had to hold her head by her hair so
it didn't hang down while she was having the x-ray.
The nurses were running around. We weren't told anything
and that was extremely upsetting! Finally they gave her a bolus
of sugar and all of a sudden she opened her eyes and sat up!
They opted to send her by ambulance because she was
stable at that time and they had another patient that was in need
of the helicopter transportation. On the way to Cardinal Glennon
Children's Hospital in the ambulance the EMT radioed back to the
ER physician asking to decrease the IV bag from D10-D5, the physician
agreed to do that. By the time we reached Cardinal Glennon and I
registered Jennifer in and returned to the ER room, she was lethargic
again. I screamed for someone to check her sugar and sure enough
it had dropped to 20 again.
The RN and I immediately ran to the Trauma 1 room.
They put heart monitors and all different things on Jennifer. They
had 10 different specialty Drs come in and evaluate her. They did
CAT scans on her brain and found out that the left side was swelling.
The Drs moved her to the ICU and a few more specialists came in
to see her.
I was in the ICU with Jennifer for 1.5 days when they
finally decided that she was stable, as long as they left her on
the dextrose. She then was moved to a room right across from the
RN's station so they could keep a close eye on her.
By day 4 they finally diagnosed a metabolic disorder
called MCAD. When Jennifer's Genetic's Dr, Dr. Grange, came in and
explained the diagnosis and statistics on children with this disorder,
I was overwhelmed. From what he told us, often the kids don't make
it to the diagnosis alive. I never thanked God so much for my little
girl as I did that day.
I want to express my deepest sympathy to the parents
who have lost a child with an FOD and to any parent that has lost
a child. I came so close to losing my ANGEL. I want to tell bereaved
parents that their ANGELS are always in our thoughts and prayers.
Rosemary Miller
rosemary@dstream.net
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