A quick update on Daegen. It has been about three
weeks now since Daegen has eaten any food. He is
currently getting nutrition (TPN) at night for
about 10 hours. The time is being changed to 17
hours. On Monday he was diagnosed with Fungal
Pneumonia. He has had a fever since Friday, July
02,
2004 with it being low grade lately. Daegen is
suffering a GI problem (Gastro Intestinal). This
causes Daegen considerable pain. He has been on a
constant dose of Morphine since July 02, 2004.
The doctors have tried different doses and various
methods to control the pain. Usually at night he
wakes up every two hours and needs another
injection of morphine. Even with the morphine he
sometimes feels the pain. It is difficult to
watch your child as his mouth quivers and his body
rolls up in a ball as he tosses side to side in
pain. He even yells "Go away. Go away." At
first I thought he was talking about me. When I
asked him if he was talking about the pain, he
said yes. When the pain is present, there is
nothing
that makes it go away. To make it worse, it hurts
to stand up (going to the bathroom, getting
weighed, x-rays). With all the fluids he is
getting he is still doing a great job going to the
bathroom instead of going in his diaper. The GI
problem will not go away until Daegen's counts
come up. They are currently non-existent.
His white blood count has been bouncing back and
forth between 100 and 200. Janelle told me today
that it was 400, which is a sign that his counts
are coming up. His CRP number is also dropping,
which means the infection is being treated
effectively. The higher the CRP number means the
infection is there. When the number
decreases, the infection is going away.
Daegen had a Bone Marrow Aspiration on Monday.
The bone marrow was empty, which is what the
doctor expected, so no surprise. The protocol he
is on calls for a Bone Marrow Aspiration on day
28, which was actually on Sunday,
but they don't work on Sundays. He will now have
an aspiration each Monday until his marrow is no
longer full. I asked the doctor about his bones
being stuck with that big needle multiple times
possibly causing any long-term problems. The
doctor stated that the bone will heal quickly and
there will be no long-term problems.
Once Daegen is on the mend and his counts are up,
we will probably know more about St. Jude. The
doctors would really like us to have a few days at
home before we go. I just hope we find out soon
about when we are going.
Alexa completed another year of softball on a
strong note. She got a hit in each of her at bats
her last two games. Thanks to Janelle's mom and
my dad Janelle and I were able to both go to most
of Alexa's games this year. I know it was
very important for Alexa for Janelle and I to both
be there
for her. She continues to grow and mature during
all of this. She is currently in a two-week
swimming lesson course. With the assistance of
her grandparents, she has been able to go to swim
lessons while Janelle is at the hospital with
Daegen and I am at work.
There should be some new pictures on the web site
soon. Please don't forget to sign the guest book
and leave a message if you do. Thank you everyone
for all your kind words, prayer and support. God
Bless Everyone.
www.dmanhero.com
Detective Lance Feyh
Juvenile/SVU
Crisis Negotiator
Topeka Police Department
320 S. Kansas, Suite 100
Topeka, KS, 66603