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Liam's Story
September 4th, 2000, the
day my wife, Terry and I had been waiting for all our adult
lives had finally come. At about 7 P.M. Terry was commenting
on how she had "cramps". We decided it was time to go to the
Hospital and just make sure everything was O.K. thinking it
was nothing more than "False Labor". BOY! were we wrong. After
the doctor asked what we were doing tonight, I said watching
the football game and then eating dinner. He said, "Well,
Terry and I are having a baby. You can do that if you want"!
At 10:59 P.M. we had a son! According to the doctors,
everything was fine but what a set of lungs! We named him
William Charles Hammonds after my grandfather but called him
"Liam". And off we went to live "happily ever after".
Almost immediately we noticed something wasn't right. He would
cry and fuss when he wasn't being held. He wouldn't sleep all
night, until we were holding him, and he was having a hard
time keeping his formula down. He wouldn't just "spit up" he
would "SPIT UP" launching a plume of formula about a foot away
from him. He was gaining weight and growing but just wouldn't
keep the formula down. The doctor said this was "normal" in
some children and to wait 4 months to see if he'd outgrow it.
People kept giving us suggestions, "Maybe he's allergic to
that type of formula" and such. So, we tried almost everything
out there. For the first couple of feedings he was O.K., but
it would happen again. On Christmas night, while at my parents
house, my folks got to see Liam do his "spitting up". They
said something is definitely wrong and to get him to the
doctor A.S.A.P. That week we had his monthly checkup and found
that he had gone off the growth chart. Weighing less than he
should be, the doctor decided to check him into the hospital
for an "Acid Reflux Test". On January 2nd, 2001, we went to
the hospital to have him tested. Sure enough he had "Acid
Reflux". They decided to put him on a drug called Raglyn, and
told us to watch for some "Allergic side effects" such as
stiffness in the arms and legs. After about 14 hours we saw
those "side effects". His arms and leg were stiff and he was
irritable. We took him back to the hospital and they admitted
him for observation. So began the hole in our hearts.
Later that night, the Doctors told us that they wanted to
transfer Liam to the University of Chicago. They were afraid
that he was having seizures and this hospital didn't have a
very big Pediatric Department that could handle such problems.
Off we went by ambulance. The following 4 days were pure Hell
on our "Lil" guy. MRI's, EEG's, Spinal Taps, evaluations, a
stick here and a stick there. After all tests came back, the
"Best of the Best" were stumped, as they were all "normal".
Then came the Gastrointronologist. He wanted an "Acid Reflux"
Test. So, they stuck a PH Probe through his nose into his
stomach, and waited 24 hours. When the results came back, the
Doctors said he was 4 Xs what a "normal" baby with Reflux
should be. They claimed this "could" account for some of the
symptoms, and to wait and see. We also got the results of the
Spinal Tap. The levels of protein were higher than they should
be. We were sent home with some medication to help with the
acid, and wait and see. The Geneticist was always in the
background. He would take it all in and make a few comments
here and there, because most of what he could offer wasn't
good, and there was no sense in alarming us for no reason.
Some blood had been taken for tests and we would learn the
results soon.
A month went by, with the help of the University, we had Liam
in Physical Therapy, and Occupational Therapy to try to help
him regain some of the functions that he used to have before
the Reflux got so bad. He also started having problems with
not being able to clear his throat from mucus. Terry and I
were almost sure that's what all this was. His little belly
and throat were just to sore, and he wasn't a "Happy Camper"!
In March we contacted the Gastrointronologist. Liam was having
a real hard time drinking a bottle, so we were feeding him
more cereal, and that wasn't coming easy to him either. We
were setup for a "Suck, Swallow, Breathe" Study. This too
would mean another hospital stay. The first day they did the
study and weren't happy with the results.
The results of the other blood tests had come back and all
were "Normal" except............. the test for Krabbes' was
"screwed up". After a few adjectives from me, the Geneticist
assured us that they had enough blood for another test and
we'd get the results back in a week or so. In the mean time,
Terry and I learned how insert a NG Tube through the nose into
the stomach so Liam could get his "Grub"! We were to go back
down for another S.S.B. Study the next day. The following
morning, March 15th, as we were getting ready to go down for
the test, the Geneticist walked in and asked if we would wait
for the study.
I asked if the results came back for the Krabbe test and he
said, "Yes". I asked if there was a reason for Liam to go
through another Study. He said, "I don't think so". We had our
answer. Liam had Krabbe disease and we were going to loose our
"Lil" Man. Liam had made a lot of friends in the hospital,
since this was the first case of Krabbe disease there, A lot
of people came and fell in love with him. So after another day
of goodbyes from all, we took Liam home.
Terry and I wanted him to experience everything he could now
that we weren't sure how long we had together. Cold, warm,
soft, hard, wet, dry, grass, dirt, snow, the experience of
going shopping, and watching Daddy pay bills! He didn't like
that! Terry also wanted him to experience camping, and the
mountains. Since we had bought a new tent so we could all go
someday when he was older. So, instead of a tent, we decided
to rent an RV! We would go at the beginning of May! On May 5th
we were to pickup the RV to be ready to go on the 7th. My
parents had decided to go with us, so we were ready! On the
5th we had a MAJOR set back. Liam developed Pneumonia and had
stopped breathing. The mucus that he had been developing was
getting to the point he couldn't clear it from his throat.
Mommy came to the Rescue!!! She and a friend, Colleen, had
done CPR and got him back! Off to the Emergency room we went.
We stayed for about 7 hours, and after arranging for Oxygen to
be delivered to the house. We came home with our big trip in
the balance. The morning of the 7th, we took Liam to the
Pediatricians office. He told us there wasn't anything he
could do that could not be done on the road and to go ahead
with our trip. We packed the oxygen, feeding machine, suction
machine, Grandma, Grandpa, Mom and Dad, and the dog into the
RV and off we went to Salt Lake City!!! We spent about 4 days
getting there, stopping and letting Liam see everything around
him! Once we got into the Mountains, it seemed Liam didn't
even need oxygen. He was breathing better, didn't have near
the mucus problem and slept better! We stayed about 4 days in SLC and headed toward home. As we got lower in elevation, Liam
again started having breathing problems and we had to "UP" the
O2 level. We got home on the 19th, and things went slowly down
hill. Terry would sleep on the couch with Liam next to her in
case she needed to suction him during the night, which would
generally be about once every half hour.
June came, and with it my first Fathers Day. Liam was really
sick by this point. He couldn't move, couldn't clear his
throat, couldn't shut his eyes or even blink. The disease had
affected his body's ability to control his temperature and as
a result we saw a temp of 107.2 . Liam got LOTS of cool baths
those last days to keep his body temp down. Finally on June
18th, when I got home from work, I noticed a film covering all
of one of his eyes and a lot of the other, because he couldn't
blink anymore. I cleaned it off, walked outside and cried. I
asked God, if he was going to grant Terry and I a Miracle to
do it. If not, stop Liam's suffering! He's only a baby! Even I
pray for a "clean kill" when I go out hunting! Don't make my
little boy suffer anymore!!!!! That night, I kissed him
goodnight, and told him "I Love you and it's OK to go. I
understand." At 6:40 A.M. the next morning the 19th, Terry
came into the bedroom and woke me saying," I think we need
you." I walked into the front room and found Liam in his
"bouncy seat" looking toward were Mommy slept on the couch.
I knew God had another Angel in Heaven, and we'd have a hole
in our Hearts that would
never heal!
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