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THE CALL
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Saturday 11/7/98 9:30 PM
Wow! The roller coaster ride continues. I just got off the phone
with a Dr. Cecere at Stanford.
They have a possible match for Zachary. He had several questions
for me about Zach and why he was in the hospital last week and
if he had been running a fever.
Trying to stay calm I told him about the congestive heart
failure and why we were in the hospital and that Zachary had
seen the Dr. today, no fever, clear ears, etc.. If this turns
out to be a false alarm tomorrow will be a very bad day. Zach
has been having problems with rough breathing and grunting especially
at night so we went in to see Dr. Maixner today. He increased
Zach's dose of furosemide to four times daily to try to counter
his problems with congestive heart failure. I also visited Deacon
Schuster today who baptised Zach in May. We had a nice visit
but I fear he is not long for this world. He has made the decision
that enough is enough and he will not continue radiation treatments.
The cancer has spread to his liver from his lungs. I'll pray
for him. We are scheduled to be interviewed by two different
T.V. stations tomorrow. Hopefully we'll get to stand them up.
I'm too nervous to write anymore for now.
Sunday 11/8/98
We got the confirmation last night at about 10:00 and were at
the airport by 10:15. The MedStar plane was a converted six or
eight seater with twin propeller engines. There were two seats
in the front, the pilot on the left and me on the right. The
rest of the plane had a bench on either side much like an ambulance.
Gina sat on the bench behind me facing backwards with her feet
up on the bench and Zach on her lap. The other bench was occupied
with the nurse and the respiratory therapist. The tail section
of the plane held our bags and assorted travel bags with medical
supplies. It was very loud in the plane and I couldn't see Gina
and Zach without twisting all the way around. I would have liked
to be able to visit with Gina while we flew but our positions
and the noise made it impossible. The flight was 2 and 1/2 hours
and there was a small clock located amongst the instrument panel
that counted the time backwards. The last 1/2 hour of the flight
we finally came out of the clouds and had a beautiful view of
the lights of the bay area and especially San Jose. Once on the
ground an ambulance took us up 101 and over to Lucille Packard
Children's Hospital and straight up to the regular pediatric
unit. It seems strange to go straight up to the floor without
stopping in E.R. like most of our other hospital visits. Zachary
had to suffer the usual poking and prodding until morning. They
took regular blood pressure and temperature readings, two blood
draws and inserted an I.V. line which is always difficult with
Zachary. Zachary only got a couple brief 1/2 hour naps, Gina
didn't get much more and I got none. Finally at 10 am they came
and got Zachary. They rolled his bed to the outside of the operating
room and Gina and I went with them. Before leaving the hallway
they stopped and gave Zach a pretty good sized dose of metazolam,
a short fast acting benzodiazepine that made him happy and playful
and then gradually sleepy. He was just drifting off into a content
sleep when we left him.
Usually when waiting for during surgery we pace around the
waiting room nervously worrying but for some reason both Gina
and I felt like if we made it this far everything would be all
right. They gave us a beeper so they could reach us when they
had news.
We went to breakfast, made a few phone calls and got acquainted
with the hospital. They paged us roughly seven hours after we
left Zach to tell us things had gone fine and they were just
closing up. Eight hours after we left Zach for surgery Dr. Reitz
came to tell us everything was going well. Dr. Reitz did the
first every heart-lung transplant in the world at Stanford in
1981. The only real difficulty they had was getting an arterial
line in. They had to make an incision in both the left and right
groin area before they were able to get the line in. Other than
that there wasn't much to tell us. Dr. Reitz even made the comment
that you'ld think he'ld have more to tell us as long as it took
but for us little news is good news. We went and saw Zach for
a while. He was not yet conscious and still on the respirator.
Monday 11/9/98 6:00 AM
Zach is conscious and recognises me. By the time we come back
from Dr.'s rounds at 10:30 he is off the respirator and has only
a nasal cannula with oxygen. Zach is on Prograf (FK506), Imuran
(azathioprine) , OKT3 (an immunosuppressant frequently used with
cystic fibrosis) and prednisone as well as some diuretics (first
furosemide and then chlorothiazide) and some antibiotics (Kefzol
and erythromycin).
Tuesday 11/10/98
We had a brief scare today. I was out in the hallway visiting
with Jan Prawdzik (Ironically Brian was down for his yearly testing)
when one of the residents came to remove Zach's arterial line.
Zach got a little upset while they were taking it out and while
kicking his feet he managed to unplug one of his chest tubes.
The chest tubes are all under pressure which enables Zach to
create the negative pressure in the chest cavity which allows
him to breath. Without that pressure Zach was unable to adequately
fill his lungs with air. It took the nurse and Dr. a little bit
to figure out the problem since the chest tube was buried under
a blanket. No harm done once the joint was reattached but it
did cause lot's of excitement. Before the resident went into
the room I felt like he oversimplified things and talked down
to us a little bit so it didn't bother me having him get a dose
of humility but that kind of excitement I can do without.
Wednesday 11/11/98
Today's bump in the road included an allergic reaction and a
positive stool culture for salmonella. The allergic reaction
was probably due to either the cephalosporin (Kefzol) or the
erythromycin. They gave Zach doses of Benadryl for the rash and
itching every six hours which made him a little sleepy but also
a little more comfortable. The salmonella much have been something
Zach picked up while we were still at home. It requires us and
the nurses to wear gowns and gloves while attending to Zach so
that the bacteria won't be spread to anyone else. I’m glad
they decided to culture the stool sample they took from Zach's
diaper right before surgery or they might not have caught the
infection until it was more advanced.
Thursday 11/12/98
Zach's allergic reaction is better. Twice Gina has stopped a
nurse before she gave Zach orange juice and I stopped a nurse
from giving Zach Bactrim liquid which he has had a mild allergic
reaction to. I am surprised when a nurse warns me that some Dr.'s
or nurses might get upset because I am always reading the chart.
I inform her that my reading the chart will continue regardless
of who doesn't like it but I did make a mental note to be sure
I have a doctor write an order that it's o.k. for me to read
the chart at any time before I sign any future consent for treatment
forms.
Friday 11/13/98
Yesterday Gina and I were at Andronico's market. It's a rather
upscale middle-upper class (not upper-middle class) grocery store
adjacent to the exclusive Stanford Mall (Macey's, Nieman Marcus,
etc.) The store contains no generic products and an entire aisle
of fine wines as well as a plentiful selection of fresh produce
and fish. The market is always packed with well dressed people,
many of which eat freshly made deli sandwiches and drink coffee
at round umbrella topped tables out front. I was looking for
a book to read since Zach has been sleeping a lot since the transplant.
Although I don't read medical dramas one caught my eye about
a Dr. who was killing patients to sell their organs. It made
me thing about the ingrained fear of organ sharing that most
people possess and how natural it is, especially for uninformed
people to fear organ donation. I didn't buy the book but the
rest of the afternoon I spent pondering organ donation and the
importance of education in the organ sharing process.
Saturday 11/14/98
Zach continues to do well. He got one more chest tube out today
and Helen, one of the transplant coordinators begins the education
process with us on how we will care for Zach after discharge.
I'm glad she is starting early because it seems pretty scary
and complicated to me at this stage. I'll be back in Spokane
when Zach gets discharged so Gina will be on her own. They do
Zach's breathing treatments of Amphotericin which they have one
twice daily since the transplant. Even after almost a week Zach
puts up a good fight and has to be held down so that we can keep
the mask on him. At one point Zach manages to get free enough
to push the mask away right into my face. Pew! I can see why
Zach doesn't like it. In the afternoon Willie and Sally Stewart
and I were able to go to the Stanford vs. W.S.U. football game.
It's the first cougar game I've attended since last years rose
bowl. After I get back we leave Joe and Melissa with Zach and
Gina and I go to dinner at the Stanford Barn and a movie. Except
for the transplant, it's the first time since Zach's first fainting
episode that we both have been away from him at the same time.
Sunday 11/15/98
Gina called me not long after I get home to Spokane.
Zach got his final chest tube out today and was able to take
a ride around the pediatric unit wearing a mask. Gina and I had
our first date 5 years ago today, my how times change.
Tuesday 11/17/98
They decided not to let Zach out of the hospital yet. He has
a fever of 100.3 and is very fussy. I don't think there will
ever be such a thing as a simple fever with Zach from here on
out. Our discharge instructions include calling the Dr. for any
fever over 100.3. Hopefully it's nothing but we are fearful of
rejection since 9 out of 10 transplant patients experience it
to some degree and Zach's experience has taught us to always
wait for the other shoe to drop. Tomorrow I will send Gina two
blood pressure cuffs, 2 thermometers and a pill crusher. Tools
that I imagine will become very common to us in time.
Wednesday 11/18/98
Gina called me at work, as usual I was there even though I was
scheduled of two hours earlier, and told me Zach still has his
fever and continues to be fussy. Several doctors have seen him
with no definitive answers. The plan is to run several tests
tomorrow to figure out if there are any other infections or if
he is in some degree of rejection. They are adding a second antibiotic
to the Cipro he already takes and are going to do and echocardiogram
of the heart (something we are very familiar with and a lung
bronchoscopy (something that is new to us). The bronchoscopy
will be the most difficult and uncomfortable for Zach. Also it
will be difficult because of his small size. Katie Stafford-Eady
(United Airlines) helped me get all my flights booked so I can
see Zach over Thanksgiving and Christmas. Flights were almost
full so I was lucky to get them, it helps to have the right people
in your corner.
Friday 11/20/98
"Life is life...fight for it!"- Mother Theresa
After culturing every conceivable place they could get a sample
from they have decided Zach's fever is due to rejection and not
infection. The Salmonella infection appears to be gone and no
other positive cultures have been found. Aiding their diagnosis
is the fact that Zach has developed a slight atrial arrhythmia.
With an otherwise normal heart this can also be a sign of rejection.
He continues to have some congestion in the lungs. Zach's bronchoscopy
yielded little information since due to his size it was difficult
to obtain an adequate tissue sample to examine for signs of rejection.
Treating for rejection involves primarily a large dose of steroids.
The other immunosuppressants (Prograf and Imuran) are at optimal
levels and nothing more can be gained by increasing them. Zach
will continue to be on the antibiotics Cipro and Vancomycin since
the steroids will drastically increase the risk for infection.
Infection is still our biggest concern among the many unpleasant
side effects of large doses of steroids. Some of the other possible
side effects include mood changes, joint and muscle pain, decreased
growth, increased blood pressure and many other less common unpleasantries.
Although we haven't wavered from our desire to do everything
we can for Zachary it is difficult to deal with all the suffering
he has had to endure. His breathing treatments are still a struggle
and he obviously doesn't feel good. Nine out of Ten transplant
patients experience some episodes of rejection so this wasn't
totally unexpected but it is a surprise to have it occur so soon.
After talking to Dr. Lianne Singer at length today I told her
my situation that I had used up all of my time off work plus
some extra and asked if I was making a mistake if I didn't find
a way to get down there before my schedule visit at Thanksgiving
and she told me that they were optimistic and that if Zach appeared
to be going the wrong direction she would call me. Hopefully
I won't hear from her.
Monday 11/22/98
I had so many people asked me about Zach today. It really helps
to think so many people are rooting for him. The first day on
steroids was pretty rough. When Gina called I could hear Zach
crying as loud as I've ever heard him cry in the background.
He was angry for the entire day either from upset stomach or
just mood changes from the steroids. Yesterday was much better.
Gina said he was a little fussy but at least she was able to
resume their walks and he is playing a little. Three more days
until I fly back down. With some luck maybe Zach will be able
to move out into the apartment by then.
Tuesday 11/24/98 5:00 AM
All the updates from California were positive yesterday. It's
one of the first days that I can remember that happening. Hopefully
today is the day Zach and Gina will be released to the H.O.M.E.
apartments. I'm up early to take Mom and Dad to the airport (they
are going to visit Zach for Thanksgiving) then I work a 12 hour
day then I leave home at 4:30 AM tomorrow for a flight down.
Yesterday Brad (My immediate supervisor) presented me with some
money from all the stores to help with Zach's care. Between all
the money, calls and cards from all the district stores, our
store, the church, the Lions friends and relatives it really
helps and most of all it is nice to know so many people are thinking
about Zach and care about what happens to him. I don't think
we will ever be able to adequately show our gratitude. I'm glad
I'll get to see Zach and Gina soon, it's been a long couple of
weeks.
Wednesday 11/25/98
Wow! I'm so excited to see Gina and Zach. Everything is going
great (Knock on wood). Zach and Gina are moved out into the apartment
and I will be down to visit them in the morning. I'm almost afraid
to let my guard down and get my hopes up but every thing is looking
really good right now. Zach ate 11 chicken nuggets today, that
must be some kind of record. The steroids increase his appetite
and he can use it. He's really skinny but with days like today
we'll have him filled out in no time.
Wednesday 12/2/98
I flew in at 11:00 last night. Katie helped me with plane tickets
again. I don't know what we would do without the people at United
Airlines. Hopefully I can someday repay their kindness. My friend
Tony Rausch brought me home from the airport.
Everything was great down at Stanford. It was remarkable just
to see Zach's improvement from the time I arrived to when I left.
The doctors decided to start reducing the dose of steroids we
have been giving Zach to fight the rejection. Hopefully we can
get down to Zach's maintenance dose before an infection occurs.
Zach is eating well and has more energy every day. It warms my
heart to watch him get excited to ride the elevator or say "tackle"
and jump on Gina or I. For the first time in a long time we are
filled with hope. I just got done watching a news bit that Heather
Catallo from K.R.E.M. 2 did on Zach over the thanksgiving holiday.
It was a pain to have the lights and camera bothering us down
at Zach and Gina's apartment but, I'm glad we did it. This time
they got the facts right and it was very nicely done. I'll have
to remember to put her on the long list of people to thank. When
I talked to Gina today Zach had been throwing his crayons all
over the floor, even after she had told him "no!" Most
people hate to have to deal with a misbehaving child but for
us it's just nice to have a child with enough energy to misbehave.
I know Gina can handle just about anything as far a Zach goes
as long as she can keep his 13 medications straight.
Wednesday 12/9/98
I just got back from dinner and a tour at the Gospel Mission
with the Lions Club. The most interesting part of the tour was
listening to the director Phil Altmeyer talk about the major
problem related to him in counseling the patrons of the mission.
In most cases what has led these men to be evolved in drugs,
alcohol, etc. and ultimately to end up at the mission is a deficiency
in their relationship with or lack of support from, their fathers.
I often worry about all the challenges that Zachary will face
in his future but being at the mission made me realize how much
I have to give and how valuable that is. I'm eager for Zach to
get back home so I can resume my role as a father.
All reports from Gina have been positive the last couple of
days. Zach is finally starting to walk a little again. It's been
about seven months since he took his first steps. He is also
talking more and more. We did have a little scare last Saturday.
Gina called at 4 a.m. that Zach was very upset and had coughed
until he vomited. I had her call the on call Dr. and they took
Zach in to be checked but by the time Gina called me the next
morning they were home watching football. I suppose it will be
a long time if ever before we will be able to be comfortable
with any kind of sickness or problem with Zach's health. Three
days until I fly back to San Francisco.
Saturday 12/12/98
I just got here (Palo Alto) and Zach isn't doing very well. He
can't keep anything down, including his medications. We've called
the on call Dr. for heart-lung at Stanford and it's Dr. Singer.
I'm glad it's someone we know. She is a young transplant fellow
on Dr. Theodore's staff. We get an isolation room in the E.R.
which is great since the E.R. is packed. The isolation room has
windows on three sides and is right in the middle of the E.R.
giving us the sensation that we're in a fish bowl. Some of our
neighbors who we can see out the windows are two different older
women are having some unknown problems, an older black man having
a stroke or heart attack and a small Mexican child that turns
blue when he cries. Gina and I can relate to the last one. The
blood levels came back fine for the immunosuppressants and after
some I.V. fluids Zach is feeling much better. They decide to
keep him overnight but by morning we are doing much better and
are able to go back to the apartment.
Tuesday 12/15/98
Zach has a full clinic day. After walking to the hospital we
first go to Clinic D to have them put the orders in the computer
then we go to the lab for a blood draw. I don't know who hates
the blood draws the most, Zach or Gina, but it's certainly no
fun. After that we have breakfast at the cafeteria in the main
hospital. We try to find a table in the back since Zach has to
take his mask off to eat. The hospital is the only place Zach
has to wear a mask but it's important since that's where the
worst infections are found. From there it's back to the children's
hospital for an echo and EKG. It's been an hour since lunch so
Zach can have his Prograf. Then on to X-ray. After a bit of a
wait we go in to X-ray. The technician is new and wants only
one of us in the room. We know how scared Zach is in the x-ray
room especially since they strap him down and we all have to
leave him to go behind the barrier. After a bit of discussion
we are both allowed to accompany Zach. After x-ray it's home
to lunch and Zach's other 12 medications. It's amazing that he
has any room left to eat at all. After a 1 hour nap we walk back
to the hospital and visit the doctors and transplant coordinator
on the transplant staff. A few medications are changed. Both
the prednisone and the Prograf are decreased slightly. Yeah!
I manage to talk them out of giving Zach Propulsid to help keep
him from throwing up. It has only happened twice since the transplant
and he is on plenty of medications as it is. Finally we're done
for the day at the hospital. We walk to the store to pick up
a few things then we walk home. With the mild weather it doesn't
take Zach long to fall asleep for a second nap on the way home.
When he wakes up from his nap it's more medications then dinner.
It's time for me to go home but Zach and Gina will play for several
hours before bed time. I'm glad he only has clinic days twice
a week and that they don't do as much on his Thursday visits.
Wednesday 12/16/98
I got back late last night from seeing Zach and Gina. It was
really tough to leave. Zach and I were wrestling on the carpet
in the apartment and he kept saying tackle and jumping on me
or his big Elmo that he got from Brian Prawdzik. I can remember
all of us kids doing the same with my Dad on the carpet in the
old farm house we used to live in. The day before while Gina
was out shopping Zach and I took a walk over across Sand Hill
road. We walked across a big field of summer fallow that reminded
me of walking out in the fields of spring wheat as a child. Childhood
is a big deal, we're so lucky to have a chance at it with Zach.
We found some trails going through sparse trees at the edge of
the field where several couples and small groups of people were
walking dogs. We crossed a creek on the edge of the field on
a long narrow wooden foot bridge. It was sturdy and well built
and across it was a narrow street with many large cottage style
homes nestled on either side of the road. It was amazing to find
such a beautiful spot with large weeping shade trees so close
to Zach and Gina's apartment. It was also amazing so be in such
nice weather after leaving Spokane's 30+ weather. Zach really
enjoys the out doors. I can't wait until spring so we can share
it some more.
Saturday 12/19/09
Wow is it cold out. Must be below 0 outside. I'm glad Zach is
down in California where the weather is more mild. I only wish
I was down there with him and Gina. Zach is doing well. They
are doing more stool cultures and are referring Zach to a G.I.
specialist to see if they can figure out his diarrhea, fluctuating
appetite and occasional vomiting. If you ask me I think his 14
medications probably have a lot to do with it. I can always hear
him talking in the background when I talk to Gina. As long as
he's jabbering I don't worry too much. We're trying to keep the
phone calls as brief as possible. The telephone bill was $500
last month. Even with all the fund raising the Lions club, Shopko
and Carrie Zagelow's company have done for us money won't last
long at that rate.
Five days until I fly back down. It should be nice for Gina
to see her mom and dad for 5 days. United Airlines donated 2
more tickets for them to fly down which is a great help. I'm
really tired since I have no days off in Spokane. I save them
up and spend them in California with Zach and Gina. I'm lucky
Kathy and Theresa, my two staff pharmacists, are willing to accommodate
my odd schedule without complaint.
Tuesday 12/22/98
Deacon Don Schuster's funeral was today.
He is the man who not only baptised Zachary on short notice before
his second surgery but also came to pray with us on many occasions.
He also visited us several times in the hospital and spent time
with us and Zach at the park and at his home. It seems so strange
that he is gone. I must have heard him refer to Zachary as his
miracle baby 50 times even when Zach was still a long shot to
even make it long enough to get on the transplant list. I guess
he was right. If I could eradicate one disease from the world
cancer would be my first choice, even ahead of heart disease,
AIDS and everything else. He was one of the most caring giving
people I've known. We'll miss him.
Leslie (Boland) Martin and Lisa (Trinkel) Koohns who were
members of my graduating pharmacy class stopped by to give me
some money collected from our classmates to help with Zachary's
medical expenses. Like all of the other individual donations
I have received directly, I immediately applied it to the account
to pay back the $7,000 loan I have taken against my 401K to cover
Zach's medical bills and other related expenses. Every dollar
we can raise or save helps better prepare us for when the out
of pocket expenses begin again in January and hopefully many
Januarys to come.
Wednesday 12/23/98
I was able to have another nice visit with Dr. Baxter a couple
of days ago. He has been very interested in Zach's progress and
inquires often. He is a retired pediatric surgeon that worked
in Spokane for several years. He is currently trying to get back
on the liver transplant list. He believes the hepatitis that
damaged his liver was acquired from a pediatric surgery patient.
He seems to harbor absolutely no ill feelings towards a profession
that he devoted his life to and may ultimately cost him his life.
It is very clear not only how much he cared about his patient
when he was practicing but also how much he still cares about
kids like Zachary.
I ran into Dr. Brutacao today in the toy department at Shopko
looking for a specific gift that one of his 5 children asked
Santa for. He is one of the pediatric intensive care doctors
here in Spokane who has cared for Zach on a number of occasions.
It was evident how genuinely concerned he is with how Zach is
doing. I'm amazed at how much he allows himself to care about
his patients. I have had the same thoughts about Dr. Garabedian,
Dr. Baxter, Dr.s Kapstafer and Maixner and so many of the doctors
that Zach has come in contact with. Certainly many of the doctors
have mentioned or exhibited their faith in God which I would
think be a necessity in such a field but in any case there is
certainly something different about these doctors who take on
such a difficult and often thankless profession. Most people
would need some sort of emotional barrier to protect themselves
from such heartbreaking situations as a 17 year boy with cystic
fibrosis Dr. Brutacao mentioned. They did everything they could
to keep the young man going while he waited on the lung transplant
list but he eventually succumbed before a donor could be found.
Pediatricians are among the most likely to face litigation because
it is the expectation of every parent that their child will be
cured, fixed, etc. The joy and affirmation of when a long shot
like Zachary survives must surely be tempered by the children
who don't make it and the responsibility of being the ultimate
decision maker in the care of such precious patients.
Thursday 12/24/98
The flight down was uneventful except for the fact that it was
Gina's mother Helen's first flight. She did wonderfully from
what I saw (I tend to fall asleep before the plane even gets
of the ground). Counting the flight each direction this will
be my 9th and 10th flight in the last six weeks.
Zach had a very nice Christmas. Gina, Zach and I, as well
as Gina's parents, Helen and Lucas Ozuna, went to George and
Margaret's house for Christmas. Their grandchildren Gregory and
Jessica were there which was especially fun for us. Zach hasn't
had many chances to interact with other kids. Jessica is especially
good with him since her mom has talked to her about Zachary a
lot in advance. Jessica is 3 or 4 and Gregory might be a little
bit older. We all sang Christmas carols and exchanged gifts and
had a very nice Christmas for being away from home.
Friday 12/25/98
Zach opened many of his presents today that he was sent by Carrie
Zagelow's company Hall Kinion as well as some of the other presents
from us and other relatives. We're trying not to spoil Zach too
much but I can see it will be an up hill battle.
Saturday 12/26/98
This was another one of those days that make everything we have
been through with Zach AND everything we may go through in the
future worth it. We went to San Francisco and saw the sights
again. Watching Zach try to catch the pigeons was cute. That's
the little stuff that we know better than to take for granted.
One day of seeing the boats and the merry-go-round and the wonder
in Zach's eyes as he sees and learns new things can make weeks
and months in the hospital seem like a small price to pay for
life.
Tuesday 12/29/98
Gina's call today brought good news. We get to reduce the furosemide
(diuretic that help's with blood pressure and fluid retention)
to once a day and more importantly we get to reduce the prednisone
(steroid that helps with immunosuppression to fight/prevent rejection)
down to 3mg per day. Our target level is 2 mg per day so we are
almost there. I'm glad we're going the right direction for several
reasons. One of which is how much the prednisone causes Zach's
appearance to change and how chubby it makes his face. Zach always
looks great to Gina and I but, we worry about how he will deal
with the effect on his appearance as he gets older. The lower
the dose of steroids the less of an issue weight gain will be
and the less risk there is of infection. Of course the risk of
rejection goes up as we lower the dose of prednisone.
Thursday 12/31/98 11:30 PM
What a difference a year makes! This time last year I was at
Santa Monica pier with my brother Jeff the night before the Cougars
first Rose Bowl appearance in 67 years. Gina and I talked on
the phone at the turn of the new year and we will do the same
this year.
This is a bitter/sweet new year. 1998 was the year we came
so close to loosing Zach on more that one occasion but also it
was the year that we were given a new chance. Somewhere else
in northern California or Nevada there is a family experiencing
a similar but opposite bitter/sweet new year. 1998 brings to
the end a year in which they lost their child but also it brings
to an end the last year they spent time with and had a chance
to make good memories with their son. I understand their pain
and hope some day I can relay to them how grateful we are that
our new start in 1999 is with our son. The marker at their son's
grave site may read 1998 but as long as Zachary is alive their
son lives on in him and is a part of every joy or success that
Zach will experience since the transplant and from now on.
Tuesday 01/11/99
Today was a long day. I had to get up a 3:30 to make my flight
home through Salt Lake on Delta. I used my sky miles from my
American Express card. One more way to make ends meet. I had
another great visit with my little buddy. Jodi Ruster, (the wife
of Jim Ruster who was one of my pharmacy school classmates and
a groomsman in my wedding) made the trip also. The first couple
of days were pretty tense between Gina and I. The loneliness,
homesickness and isolation are wearing on Gina and the travel
and long stretches of work are wearing on me. I am usually able
to fall asleep on a commercial plane before it takes off. It
was nice for Jodi to visit Gina, the more connection she has
with the rest of the world the better. We went to Coit tower
and China town in San Francisco, both firsts for us. Gina and
Jodi were able to go to the mall while Zach and I stayed home
to watch football.
At the H.O.M.E. apartments we met a little boy who was also
two years old. He was perfectly healthy; it was his grandmother
who had just had the transplant. He had on a little superman
costume and was taller and probably 15 lbs. heavier than Zach
but it was the closest boy to his age and size he has been around
since his transplant and it was great to see them play together.
They ran all around and had so much fun. I don't want to deprive
Zach of that kind of fun as he gets older but I am very concerned
about how he will handle a preschool or kindergarten setting.
We want to make his life as normal as possible but kids of that
age seem to always be sick which is especially of concern with
Zach since as I have said before most transplant patients are
lost to infection not rejection. Although neither Gina nor I
have any background in education we talked some about home schooling.
Although we have a great support system with so many Zagelow's
who are teachers it still seems like such a major undertaking.
One thing we did decide on is that we are going to put everything
on hold as far as purchases including getting a separate car
again for Gina so that we can buy a computer. We want to create
a web site for Zach to keep friends and relatives informed, to
help people going through similar experiences with organ need
and/or transplant and to forward the cause of pediatric organ
donation. With the financial support we have received we are
finally caught up on medical bills and have paid off the loan
I took against my 401K to help with medical expenses. We realize
that the New Year will bring more medical bills and we want to
be sure that we keep ourselves in the strongest financial position
possible to be able to best support Zach and his medical needs.
I called the insurance company and we have used up 47% of Zach's
lifetime maximum benefits and he's not even two years old yet!
Tuesday 01/12/99
Great news today! Zach had one of his best doctor visits yet.
They reduced his prednisone to 1mg twice daily, which is the
baseline level they were trying to get him to. Also there is
a very good chance that Zach will be able to come home in 3-4
weeks.
Monday 01/25/99
I just got back from another good visit in California. I think
this was my seventh trip but I may be loosing count. Thursday
I mostly slept and caught up with Gina and of course Zach and
I played and we watched a movie but mostly that's my recovery
day. Friday we didn't do much either, we went for a walk and
saw a little more of the Stanford campus including the student
union building, Bill Gates' computer building and of course Paul
Allen's building too, the new improved museum was incredible
even from the outside. It wasn't too long of a walk since it
was pretty cold for Zach. That evening my long time friend from
Whitworth that I played on the tennis team with, Willie Stewart,
and his girl friend Linda came over to the apartment and we made
pizza. Zach was a ham as usual but it sure is nice now that he
can entertain himself a lot more. On Saturday we got up and went
out to breakfast in San Jose. It was just a coffee shop but it
had many tropical looking plants and decorations which made for
a very nice atmosphere. Zach ate some bacon and some of his waffle
too and was very well behaved. We made it through the whole meal
with out him getting fussy and we talked about how at one point
we would have given anything just to have one day like this and
it wasn't even noon yet! Next we toured the Winchester Mansion.
Zach fell asleep half way through. Mrs. Winchester sure was one
strange old bird! Sunday we managed to wrestle our way through
church. Zach is still trying to master the art of being quiet
and staying still for a whole hour. We were then treated to a
great breakfast over at George and Margaret's in Redwood City.
Then on Sunday night I managed to sneak out with Willie and join
the legendary Whitworth tennis coach, world traveler and story
teller Dr. A. Ross Cutter Jr. and his lovely wife Shirley for
dinner at a little Italian place in San Francisco. Coach and
Mrs. Coach have done more living in their 70's than most people
do in a lifetime and they show no signs of slowing down. They've
been staying at the Ansonia in San Francisco for many years and
the place doesn't look a bit different than when I was there
almost exactly ten years ago. I've lived like a hermit with the
schedule I've been keeping so it was a real treat to dine with
the coach. My head is still spinning from his fast a furious
story telling, jokes and conversation. Zach and Gina were both
sleeping soundly when I left for the airport a little after six
a.m. I'm in much better spirits than usual since I get to go
down again in less than a week. Finally I have some more valuable
vacation days at my disposal. Hopefully my next visit to California
will be my last one for a while. |
