The New Millenium
Thursday, December 9th
We met with Carol Glenn from the Spokane Guild School, two of
Zach's speech & development therapists and two representatives
from district 81 the local public school district. When Zach
turns 3 he is no longer eligible to go to the guild school so
the local school district will then provide any preschool or
therapy Zach receives.
Sunday December 12th
We had some nice family time today. After church we went out
to dinner at Applebee's.
Saturday December 25th 4:00 PM
Merry Christmas! Everybody is taking a nap so I though I'd take
the chance to update Zach's Web site. Zach is doing great. He's
had the week off from his speech and developmental therapy at
the Spokane Guild School. Zach continues to make great progress
although no talking yet. Monday we have another blood draw to
check the Dilantin levels and Prograf levels and on Wednesday
we have an appointment with Dr. Garabedian. Zach has been opening
his presents in shifts since we got home from church yesterday.
Every time we open a present it must be played with for a while
before we can move on. Some highlights have been a tricycle,
a little bike with training wheels and some more computer games
for Zach to play with his mom and dad. Zach has been playing
with his Grandpa and Grandma Zagelow yesterday and today and
we've all been enjoying our first Christmas together where we
haven't been worrying about Zach's health. It's been great, now
all we need is a little snow!
12/26/99
When Zach was in the hospital last I found an interesting book
in the library about heart lung transplantation. It was interesting
to me to see what the actual plumbing of the surgery looks like.
There are actually only 5 vessels which must be cut and reattached
when the heart and lungs are transplanted together. Here is a
graph I found
.
12/27/99
Zach had a great Dr. visit at Dr. Garabedian's today. Everything
looked great. Prograf was 12.8 which is a little higher than
usual. We had some conflicting information about what level is
best so I'll follow up with Stanford. I believe 8 to 15 is acceptable
but one letter does read 5 to 10.
12/28/99
Stanford called back on the Prograf target level and it turned
out I as right on this one. Just another reminder of how important
it is for parents to do their best to try to be part of the health
care team and to learn everything the can.
12/31/99
I had an interesting visit with Jill Adams who noticed my organ
donation pin (a green ribbon) and we talked about her job in
organ procurement. She is currently on sabbatical from what sounds
like a very emotionally draining job. Our family has been fortunate
that we've only ever had to deal with the recipient end of organ
donation since that's where all the potential joy is. We talked
about some emotional issues as far as the recipients go such
as false alarms or dealing with the fact that their donor often
met with a tragic end especially those that were not accidental
such as child abuse or suicide. I think the important thing for
a recipient or recipient family to remember is that the loss
of life would have occurred either way in spite of the organ
donation. The more I learn about organ donation the more fascinating
it is.
1/1/00
Happy New Year! Zach managed to stay up past midnight. We went
to Randy & Kathy (a pharmacist at our store) Axtell's house
south of Spokane and there were lots of kids for Zach to play
with. We're getting braver with him around other kids especially
since we really feel like it helps his development.
1/11/00
Zach and I just got back from the hardware store. I remember
how I always got to go everywhere with my Dad growing up and
how much fun it was (Dad was farming at the time) so I try to
take Zach with me as much as possible when I'm off. We had a
great time. It's especially fun for Zach to get out since we've
been laying low with how bad the flu bug has been going around
lately. Each night when Zach goes to bed now Gina tells him to
say good night to Daddy and he comes and gives me a big hug.
It's the highlight of every evening. Lucky, lucky, lucky!
1/14/00
Zachary's Great Grandmother Dorothy who lives in Bellingham WA
with my aunt and uncle got of out the hospital today after suffering
another bout with her congestive heart failure. We're glad she's
back home and doing better since we can certainly relate to most
of her symptoms since Zach went through the same things. Extra
fluid build up, difficulty breathing, disorientation and fatigue.
1/24/00
Zach's doing great. We have a pretty spirited wrestling match
every day. His newest thing is he wants to know what everything
his called so he takes your finger and points it to stuff. Gina
has been doing a great job of helping with his therapy and being
sure we work on his things for class at home.
I looked at a digital camera this weekend. It would be nice to
have one that prints the picture right on the disk and then I
could put the "picture of the week on Zach's web site and
send regular pictures to Zach's Great Grandmother in Bellingham
but at the current prices it looks like it might be a few years.
I'm sure they'll go down eventually. Look at VCR's, now you can
get one for $100!
1/26/00
Kris one of the pharmacists at another store in our company just
delivered her baby early by emergency C-section. There were complications
due to a ruptured placenta that made them take the baby at 28
weeks and at only 2 pounds. Gina and I have both spoke with her
and gave her some words of encouragement. Due to the bleeding
complications there could be some damage to the bowel plus Dr.
Leonard (who also did surgery on Zach) did surgery to close the
ductus arteriosis which hadn't had a chance to close. It brings
back a lot of memories for us, especially since the baby is in
Deaconess hospital, the same hospital Zach was born at. Technology
has come so far, this child like Zachary is another miracle of
science. I can remember reading somewhere that the incidence
of babies with heart problems has been increasing by about .1%
a year so the odds are increasing that it will effect all of
us or someone we know at some point. We'll keep them in our prayers.
1/27/00
Zach has been sick the last couple of days with a cold and a
slight fever so we're going to take him in to be checked out.
He has a bit of a cough which always scares us. We have a 4 o'clock
appointment with Dr. Kapstafer.
10 p.m.
We've been back home for several hours and Zach is doing much
better. He still is sick but the antibiotic (Suprax) that Dr.
Kapstafer gave us seems to be helping. Zach only has an ear infection
so we're very relieved.
We received a very nice E-mail of encouragement from Costanza
Ferrari from Brussels.
Her sister has pulmonary hypertension (Zach's biggest problem
before the transplant). It's always nice to get encouragement
but we've never had it from so far away! 
1/30/00
Zach is doing better today. Between his ear infection, fever
and diaper rash from diarrhea probably due to the antibiotic
he has been miserable for the last couple of days. Today he finally
is getting back to himself again and is playing and having a
little fun. An ear infection should be no big deal but since
this is only our second time getting really sick since the transplant
(see this is only our second fever) and since we had such a bad
time of it over Thanksgiving with the
seizures and everything we can't help but worry a little too
much.
We also got a nice note from my Dad's old army buddy Jim Morski
and his wife Mary in Nevada.
Belgium.......Nevada.........Where will the next note come from?!?
(-:
2/2/00
Six more weeks of winter....Yuck! Zach wants to go out and play!
We were in to see Dr. Maixner and started Zach on some albuterol
to hopefully help clear up some crackles he has in his lungs.
Dr. also ordered cultures of Zach's nose and throat for influenza
and RSV(respiratory syncytial virus). Both have been going around
in Spokane in epidemic proportions. Dr. Maixner also talked about
the possibility of starting Zach on Synagis - a monoclonal antibody
to help prevent RSV. As usual we're pretty unique in our situation
so Helen (transplant coordinator/nurse) from Stanford is investigating
it with the doctors down there for me. I don't know what we'd
do without the support of Stanford.
Karen Lyngholm current echocardiogram tech. and former pharmacy
technician at my pharmacy (Shopko) checked in via E-Mail from
Colorado today to let us know she was following Zach's progress
and also that she's moving. Have fun in Houston!
Zach's newest picture is courtesy of Zach's aunt Julie.
2/8/00
We're now working with Health Team Northwest which handles the
administration and billing of Synagis. Stanford conservatively
gave it the o.k. but are cautious as usual. I've talked more
to Dr. Maixner about it. Since it is an antibody itself it is
not like other vaccinations that require the immune system to
produce antibodies in response to it. Instead the Synagis antibodies
just would fight the RSV on their own. That's the good part.
The bad part is it's an IM (intermuscular) shot which Zach isn't
too fond of and it only lasts a month so it would have to be
repeated every month during the RSV season. Also it's about $1200
per month for something that is only preventive (ouch!). Jackie
the nurse at HTNW is working with our insurance to see what they
will cover.
2/10/00
Zach was still having diarrhea this morning and so we kept him
home from the Guild School on his last day. We'll miss the people
there, especially Steve and Dan who had Zach the most for therapy.
We'll be sure to stop in another time to say our goodbyes.
We met this afternoon with the team of therapists from the
school district. Since Zach turns 3 on Sunday his speech and
developmental therapy will now be done by the school district.
Although we're sad to leave the Guild School we really liked
everyone from District 81 and we're excited to see the work Steve
and Dan have done carried forward. Starting next week Zach's
therapy will be done at home instead of across the city so that
should really take a burden off of us.
We were concerned that Zach's diarrhea would cause us to cancel
his birthday party but luckily he got better. We never know when
something is going to turn out to be serious or if it's just
another minor thing that kids go through. I talked to the father
of a young man tonight who has had 29 surgeries. Not only did
I marvel at the bravery of the young man and his family, it reminded
me that in spite of the things we have been through we are so
very fortunate.
2/15/00
Zach had a great third birthday. Every birthday is a precious
milestone but this one was particularly good since Zach had a
really good time. We spent the weekend in Yakima with my cousin
Paul, his wife Andera and their young son Kaige. Zach had a great
time on Saturday at Gymnastics Plus in Yakima where we had a
party and he was able to play with cousins and the children of
other friends. Zach especially enjoyed playing with his cousins
Angel & Kristen and friend Hanna. All three girls are several
years older than Zach and they do a great job of taking care
of him and making sure he has fun. It was also nice that so many
of Gina's relatives from Yakima could come and see Zachary. We
haven't been able to visit out of town much for the last couple
of years so I was glad they all got to see Zach.
Zach has made great progress the last couple of days on eating
new foods. This is something we've been working on for a long
time and we're finally starting to make some progress. Also Sandy
(the teacher from the school district) was over to our house
today to do her first therapy session with Zach. The seemed to
get along great. We're looking forward to more progress.
Zach had his first shots of Synagis to protect him from RSV.
One of the nurses who gave Zach his shots was Kim who helped
see Zach through some very trying times while he was on the respirator
before the transplant. It was a very emotional and happy reunion
for Gina. Zach is doing well after the shots and seems to be
having no ill effects.
Monday 2/21/00
Zach and I went in for a blood draw today in preparation for
our visit to Dr. Garabedian on Wed. Zach was very brave like
always. The top floor of the heart institute where Zach has his
blood drawn has a great view so Zach always gets on a chair and
looks out the window. Then when it's our turn Zach and I go in
and like always he sits on my lab so he's tall enough that way
plus that way I can help hold him still. Usually it just takes
them one poke but this time it took too. Once Zach gets some
candy from the nurses and a sticker, we're on our way and the
tears dry up fast. If all goes good with the levels we should
be able to go another six weeks until the next one.
Wednesday 2/23/00
Dr. Garabedian is just back from neck surgery. It's odd to see
him in the next brace and we joke about how anyone with as much
medical knowledge as he has must be a difficult patient! (-:
Cindy does the usual e.e.g. and visits with us briefly. While
we wait in the exam room for Dr. G, I leaf through one of the
magazines they have there.
Exceptional Parent is devoted strictly to families with special
needs kids. After reading about some of the parents with autistic
children and a couple of families with kids with Downs Syndrome
I'm reminded of just how lucky we are. The appointment went well,
no signs of rejection and we didn't have to have an echo cardiogram.
I made it to the Lions club tonight and I got the chance to update
everyone on Zachary. The money they have raised in Zach's trust
fund has been instrumental over the last couple of years in dealing
with Zach's medical bills. They're a caring bunch of quality
people. |