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11/13/04
Things are going well for Zach and his little brother Cole.
Between work and all the things the boys are involved in it is
very difficult to find the time to do updates. Zach does Karate,
Catechism on Wed. and he and I go ice skating every Sunday and
then watch a little hockey before we come home. Cole just finished
soccer and now is doing swimming lessons at the YMCA.
Also my scanner broke but I plan to get a digital camera @
Christmas so new pictures should be coming for the new year.
Zach had a bout with pneumonia this week but is home and doing
great. The latest theory is that untreated respiratory issues
can increase the likelyhood of obliterative bronchulitis so they
are very conservative and aggressive with treating anything where
Zach has a severe cough. We me some wonderful people during our
first stay @ Children's Hospital of Milwaukee and I wish had
had more of their names to ad to Zach backers.
1/2/05
Nothing earthshattering to report which is always good news in
the world of transplant families. Zach had a filling right before
Christmas which was a big deal for us since this was the first
time they didn't put him under to do dental work. Zach's getting
braver in swimming lessons although his brother Cole is fearless
and a class ahead of him, Zach has a much greater since of his
own mortality since all he's been through. We spent most of the
boy's Christmas vacation at Wisconsin Dells. The highlights were
the circus museum and especially feeding the alligators. Zach
now has a t-shirt and a rubber alligator and he is very attached
to both. The boys were spoiled for Christmas as always so it's
back to work to pay for the gameboys and computer games.
4/16/05
Spring has finally arived in Wisconsin...we thought it would
never get here! Zach had his anual bronchoscopy over a month
ago and the actual bronchoscopy itself was much less eventful
than last year. The rate the tissue samples from 0 to 5 with
0 being just like he was born with the lungs and 5 being acute
rejection. The tissue sample came back a 1 which was a little
bit discouraging since we scored a 0 previously but being more
than seven years since Zach's transplant it is not unexpected
to see some chronic rejection at this point. It is also possible
that recent bacteria or viruses caused some of the inflamation.
One of the things they have been trying to do to prevent rejection
is to be very agressive with every infection or with every virus
that occurs. That has meant more trips to Milwaukee, more hospital
stays and more hospital bills. It's also hard on the family since
this seems to always happen when I'm on the road but if it helps
the health and longevity of Zach's lungs than it's of course
worth it many times over. They have also added the antibiotic
Zithromax as a maintenance drug since it has been shown to help
somewhat with the inflammation as well. They are tentatively
planning another bronchoscopy for this summer to get a better
idea of how the lung tissue is looking.
Recently Zach tested positive of RSV so he recieved 7 weeks
of inhaled Ribaviren. Zach would spend two out of each eight
hours in the breathing tent and was free to do as he pleased
including leaving the hospital with a day pass in between treatments.
Zach is very comfortable in the hospital (thinks he owns the
place..which isn't far off considering the Dr. bills). At one
stretch we even left him alone with the nurses for part of a
day due to schedule conflicts and he did great.
7/30/05
Zach's been having a great summer. We enjoyed our trip to Washington
to visit all the relatives and have vacation. Upon returning
from vacation Zach decided that he no longer wants to do Karate.
This was pretty difficult to take since Karate seems to have
really helped his discipline and self confidence but he is enjoying
T-ball now and continues to be a voracious reader as well as
spending time on the computer. After the multiple summer blockbuster
superhero movies that we have taken him and his brother to, Zach
has dubbed himself "history boy" because of how much
he knows from all the history reading he has done this summer.
I'm pretty sure that's a super hero that no one has thought of
yet!
In the next month Zach will have another bronchoscopy to determine
if the Zithromax they have added as a maintenance drug has quited
the inflamation in his lungs. We'll eagerly await the results
of that but otherwise everything has been great medically. Prograf
levels have been good during Zach's blood draws.
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