Zach's One Year Transplant Anniversary
November 3, 1999
My thoughts are such a jumble this week. We're preparing for
our 1 year visit to Stanford. It's so strange, our joy is tempered
by the pain we feel for the donor family. The one year waiting
period to send a information package to the donor family will
soon pass. We've been working on a letter and a some home video
to send to the donor family but are at a loss for words. There
were many times I would have traded my own life for Zachary's
but only someone we've never met could make the choice to save
our son. Thank you seems so inadequate but it's all we have.
November 5th, 1999
A Mother's Point of View, By Gina:
We leave for Palo Alto tomorrow , Zach's appointment is on Tuesday
the 9th on the exact day one year ago that he started his new
life. As the day gets closer I hope that we can all take some
time out from that day and give thanks to God for the chance
for a new life for our son Zachary. Zach has progressed tremendously
and everything about him is a miracle the way he laughs, cries
and runs and plays, Each new thing that he does is a milestone
even when he tries to use a fork or plays with a toy in a new
way to me it is all so amazing because a year ago we were not
even sure that we would have our son let alone be where we are
at today. As we watch the video's from the a year or even two
years ago all we can do is thank God and all of our friends and
family for all the support and prayers that they have given us.
Zach is now only on 7 medications which is great considering
right after the transplant he was on 13 different medications,
and we have been so lucky because the only complications that
we seemed to have had are very minor colds which I think are
due to allergies. Zach is now attending the Spokane Guilds School
which helps developmentally disabled children who are challenged
and need help to catch up on occupational therapy, physical therapy
and speech therapy which is what Zachary is getting help on.
I have noticed the change in him since he started the programs
and he is way more outgoing and is able to do so much more with
everyday playing and communicating. I hope to get Zach enlisted
in some preschool activities at Gymboree so that he can finally
be around other children, because of him being immunosupressed
he is very high risk being around other children and catching
whatever cold or bug that they have so we have had to be very
careful about having him around them. I can tell that he is not
used to other children because when my friend Janet brings her
son Spencer (18 months) over to play or even other small kids
he wants nothing to do with them. Yes, Zach may be a year behind
on so many things but we don't let that cloud our minds and try
not to compare Him to other kids (which is very hard not to do
) but we have to be so extremely grateful for the fact that he
is alive and for the donor family. The donor Family.......how
do we say thank-you to a family that has given us so much and
at the same have dealt with a very painful loss, It is so wonderful
that they were able to look past their loss and save so many
other lives please let there be other people out there that are
able to do the same thing so that we have many more happy endings.
Thank you To all who have been a part of Zach's life and all
that we have endured especially to Dr. Reitz and Dr Garabedian
and most of all the Donor Family. God Bless, Gina Zagelow
November 6th, 1999
We didn't get much sleep last night. Packing didn't take long
but we spent a lot of time putting the finishing touches on our
letter to the donor family and the video for them. Our flight
out is a 8 am....too early even if you don't have a 2&1/2
year old. The flight is delayed an hour which is good news for
Zach and I since we don't do well with out breakfast. After a
leisurely breakfast we're off. Zach watches out the window for
the first 15 minutes of the flight then Zach, Gina and I all
read our books. What a big boy!
It was great to see the Staffords again (who we met through
our church and some help from the Prawdziks). We spent the weekend
catching up and enjoying their company.
November 8th, 1999
After a couple of calls I managed to get an appointment for a
photo-op. for Zach with Dr. Reitz at 11:15. That's exciting for
us; not just because he was Zach's surgeon but also since he's
a bit of a celebrity in medical circles having done the worlds
first successful heart-lung transplant in '81.
We decided that rather than ruining two days we would spend today
in Santa Cruz and tomorrow will just
be an extra long day with all the testing. Zach slept on the
drive there but awoke in time to have a great time on the beach
and then dinner on the pier while we watched the surfers out
the window. What a great day! That night I managed to sneak away
for a pitcher of beer and some Monday night football with fellow
Whitworth Tennis Alum Willie Stewart at the Alpine Inn near Portola
Valley.
November 9th 7:00 a.m.
Today is jam packed. We are up before 7 and getting ready for
a very busy day. We manage to squeeze in some quick cereal at
George & Margaret's before we rush off for Stanford. We have
a short drive but traffic is always crap shoot down here. Luckily
it's not too bad today and we're able to get to Stanford in plenty
of time so there's not risk of us being late for our blood draw.
After stopping at clinic D to get the ball rolling we manage
to get the blood draw at almost the perfect timing to be a good
12 hour trough level. Zach get's tougher at every blood draw.
After he was done he even stopped to check out their computer.
Usually he can't get out of there fast enough. Sorry, no Elmo
or Reader Rabbit on this one!
10:30
Next were on to a detailed echo cardiogram and an EKG. Gina's
getting better at this. She is prepared with one of Zach's favorite
Thomas the Tank Videos so Zach was very well behaved.
11:15
Dr. Reitz was waiting for us when we got to the second floor
of the Falk building. The great room as you enter is two stories
tall with the second floor balcony ringed with busy cubicles
full of workers and secretaries. Dr. Reitz met us soon after
we came up the elevator in the middle of the great room. He showed
us into his cozy but well appointed office. Dr. Reitz is a polite,
quiet almost shy man whose soft spoken demeanor is in sharp contrast
to the bold assertiveness that most of the surgeons we've encountered
possess. Zach was very comfortable with Dr.
Reitz. We took lots of pictures with our camera and with
Dr. Reitz's digital camera. He surprised us by giving us the
disk out of the camera when we were finished with pictures. Dr.
Reitz also loaned us a couple great books "I'll Take Tomorrow"
by Mary Gohlke (The Story of the Courageous
Woman Who Dared to Subject Herself to a Medical Experiment-the
First Successful Heart-Lung Transplant) and "Atlas of Clinical
Transplantation" (The heart-lung transplant portion was
written by Dr. Reitz). Dr. Reitz also share with us the story
of a man in his 30's who he transplanted and whose lungs look
perfectly normal 16 years later. Any story we hear about long
term success with a heart-lung transplant is a welcome one! Dr.
Reitz is a celebrity to us but he treated Zach as though Zach
is a celebrity to him. I don't think it's a coincidence that
the most successful people in life are also the nicest.
12:00
We got lost in the shuffle at X-Ray but finally we get that taken
care of. Zach is very cooperative even though they strap him
down. They like him to cry a little so that he will inhale and
give them a better picture. Even if Gina and I both leave the
room he still won't cry. Too much practice to be scared anymore
I guess.
1:00
The heart-lung follow up team of Dr.
Theodore, Helen Luikart (One of the transplant nurses and Dr.
Singer's replacement resident Dr. Eakachai Sathianpitayakul (Try
to say that 10 times fast) who goes by Dr. Sath are able to see
us. All the data looks good, the echo and x-rays are clear and
his lungs sound good. All stuff we already know from Dr. Garabedian
but we always love hearing good news anyway. None of these are
very good measures of chronic rejection which is the big thing
we worry about. Ideally they would like to do a brochoscope and
get some lung tissue to examine but Zach lungs are still too
small for that to be worthwhile. The other option which isn't
quite as good since the heart usually shows less rejection than
the lungs is a heart cath. This would require a whole day and
a second day for recovery so since everything looks good we get
to put that off until our next visit. No medication changes is
also welcome news since we were afraid they would want to go
up on the steroids.
3:00
We page Martha Russell the social worker who is just finishing
up a pre-transplant consultation. It seems like 100 years since
we went through ours. We give her the video and letter we wrote
so that it can be forwarded to her counterpart and the center
where the donor came from. It's good to visit with Martha but
it seems kind of anticlimactic to give her the stuff we've worked
on and not to know for sure that it will even make it to the
donor family. We hope the information on Zach will be a comfort
to them.
6:30
We have a nice dinner out at Chevy's with George and Margaret
to say thanks for having us.
November 9th, 1999
We managed to squeeze in a quick trip to San
Francisco before our flight home. Zach did great on the flight
again but it's hard to keep him sitting down during take off
since he wants his face a close as possible to the window. No
fear of flying here!
11/13/99
Don Bodeau from Wilbur WA was in the store today. He stopped
in the pharmacy to tell me about the loss of his son Mark. Mark
and were the same age and played sports against each other throughout
Junior High and High School. He died suddenly and unexpectedly
after suffering a brain aneurysm during a workout. He left a
wife and two small children ages 2&1/2 and 4&1/2. It's
all I've been able to think about all afternoon. It's such a
terrible tragedy but at least he was an organ donor. He was fit
and health and some lucky people on various transplant lists
will get a second chance at life because of his and his families
decision. With out that choice it would have made his loss even
more terrible.
Tuesday 11/16/99
Zach has a fever of about 100 today. Probably no big deal but
Gina and I both got a little freaked out. Hard to believe this
is our first fever since the transplant, especially since that's
been more than a year ago. No matter how healthy a child is I
imagine going a year without a fever is probably pretty rare.
Both Dr. Maixner (Zach's pediatrician) and Pat at Stanford (One
of the transplant nurses) said it's too soon to do anything and
just to watch him. I think I need to quit reading so many sad
web sites on the internet since I just scare myself into worrying
more.
Wednesday 11/17/99
Wow, this has been one of those days taken straight out of last
year. Zach's fever was up even more today and then about an hour
after his Prograf he threw up. We called for Dr. Maixner and
got an appointment instead with Zach's original pediatrician
Dr. Kapstafer. We didn't have to wait long. Dr. Kapstafer looked
at Zach's throat and, combined with his temperature, had him
admitted to Pediatric ICU at Sacred Heart. Dr. Graves was on.
He's the head Ped's intensivist who has cared for Zach many times
in the past. He didn't waste any time. He immediately had cultures
done and had a line put in so Zach could get I.V. fluids, steroids
and antibiotics. Zach's temperature continued to rise all afternoon
to about 102 or more. Also his chest X-Ray was a huge concern
since it didn't look as good as one we had six weeks ago. Later
in the evening Zach's temperature came down to normal and he
was able to keep down his evening oral Prograf dose so our hope
is that Zach is on the road to recovery. All through the ordeal
his blood oxygenation (O2 Saturation) was good so hopefully tomorrows
X-Ray will confirm our theory that the X-Ray might have just
been bad. This was our first time being sick since Zach and Gina
came home in February and it wasn't much fun.
Friday 1/19/99
All is well with Zach and we're back home again. Zach was glad
to get that IV out and have his hand back. It was cute on Thursday
night when the nurse took the Oxygen sensor off of his toe he
held his hand out to her to try to get his IV off then. Zach
will be on oral Zithromax for the next few days while the rest
of his strep throat clears up. His fever is gone and Dr. Garabedian
thought Zach's latest X-Rays looked just fine. Zach has eaten
better since we've been home and hopefully in a couple of days
we'll be back to our old routine. Pheeeeew!
Monday 11/22/99
Well we seem to always be able to take scariness to the next
level. All was going great yesterday. After hanging around home
and watching football and Thomas the Tank Engine all day we went
to the late service at church 7 p.m.. Zach was doing great. We
went home and Zach played a little then Gina put him to bed.
At 11:00 PM I was still up and I heard Zach fussing while Gina
went to rock him back to sleep. By 12:00 Zach started throwing
up, which is never a good sign with so many medications for him
to take. Zach continued to fuss and vomit throughout the night.
After a discussion with one of the PICU nurses at Sacred Heart
we decided to wait until morning to take Zach in. AT about 8
a.m. we had both Dr.'s Maixner and Garabedian paged since Zach
was still in so much discomfort and kept trying to throw up.
Dr. G. called back first and he had us take Zach into Pediatric
Intensive Care at Sacred Heart Hospital. We took Zach in and
they soon had his i.v.'s going. Zach was resting comfortably
so I went to work. Gina and I talked on the phone a couple times
during the day and everything seemed about the same. In the afternoon
they started the Prograf i.v.along with his other medications
all intravenously. At 6 Gina called and I talked to her and then
to Dr. Kuyper. Zach was having seizures and apnea (difficulty
breathing).
Gina's take:
Everything seemed to be going smoothly until Zach had an apnea
episode where he turned blue and was pausing with his breathing
they gave him oxygen right away and he got his pink coloring
back, I had noticed his lips turning blue but I thought I was
just imagining things so I never said any thing to Kathy (our
nurse) this was about 3:00. Of course Kathy being on top of everything
noticed it right off and got him back to himself. About 5:00
the same thing happened but this time I was about to page Kathy
but she came running in because the monitor at the nurses station
told her what I was seeing. The next thing I know Zach is on
the bed and there are like 5 or six nurses and a couple of doctors
all trying to get him back to breathing I was really scared and
called Mike immediately at work and had Dr. Kuyper tell him what
was going on, then I had Jamie paged (she works in the pharmacy
) and she came up to stay with me until Zach was doing better
which wasn't until about 8:30 and by then Mike and Dr. Garabedian
had shown up. Everything happened so fast and I can't recall
it all but I can say it was a sight to see Dr. Garabedian when
he found out that Zach was not breathing he rushed past everyone
in that room and took off his jacket, rolled up his sleeves and
took over. I loved him for that and I honestly was not happy
until I knew he was in that room with us.
It took me about 15 minutes to get to the hospital and it
was a pretty scary sight when I first got there. They were bagging
Zach to help him breath and he was in the middle of another seizure.
We had some quick introductions with the Neuro Dr. who was assisting.
Dr. Kuyper and Dr. Garabedian. I jumped into the middle of what
was a pretty active discussion on what could be the problem.
I felt pretty certain that Zach might be toxic on his prograf
since I had considered that possibility when we started his antibiotic.
Zach was on Zithromax which is a close cousin to erythromycin,
Erythromycin can rapidly increase Prograf levels. I was able
to dig around in our papers we keep on the clip board that we
chart all Zach's medications and find a sheet Stanford gave me
on drug interactions. It seemed to make my case very well. As
Zach went in and out of consciousness with several seizures they
debated whether or not to intubate him to keep him breathing.
Gina and I took turns talking to Zach since he seemed to respond
and breath better when we talked to him. The Neuro Dr. Kate Lefond
gave Zach i.v. Valium and Dilantin to help curb the seizures.
Dilantin can also help to lower Prograf levels so it seemed like
a very logical choice. All the while I struggled to stay objective
so I could participate in the brain storming process. I felt
very guilty for not having questioned the potential drug interaction
I had expected earlier . They did a CAT scan and a spinal tap
to help rule out other possible causes for the seizures such
as meningitis or a problem with the brain. Both came back normal.
We thought we had the problem solved and Dr. Garabedian and Dr.
Kuyper ordered a Prograf level and a Dilantin level. The Prograf
level came low and the Dilantin was high, exactly the opposite
of what we expected! Hoping the lab had made an error they reordered
the tests and it came back with an even lower Prograf level.
Since too high a Prograf level can readily cause seizures, we
were discouraged to see refuting evidence to our theory. All
the while Zach was doing better. His breathing improved and he
became conscious and then was comfortable to take a nap. Our
nurse, Lark, called Dr. Garabedian to find out what to do with
the Prograf. Too high a level could mean the seizures would return
and too low would put Zach at risk for rejection. Like me, Dr.
Garabedian could not believe the lab values, in fact, he didn't
believe them at all so he decided we should wait until morning
to see if Zach continued to improve and then take another level
in the hopes that the night lab tech might have done something
wrong. So that's where we sit for tonight. Zach is resting comfortably
and appears to be doing better but his lab values for his immunosuppressant
are at a potentially dangerous low level if correct. I'm exhausted
and since I only got less than a couple of hours of sleep last
night, I'm going to go to bed so I can be at the hospital early
tomorrow. Keep the prayers coming.
Tuesday 11/23/99
They took more labs today and our theory that Zach's seizures
being caused by too high of a Prograf level have been dispelled.
In fact we had to start the Prograf back up since it was getting
dangerously low. With that theory gone they went ahead with the
MRI that Dr. Lafond had ordered. I still need to talk to the
Dr.'s more and I've been spending time at the hospital library
to find out what I can but what they believe they have found
is evidence of an old parietal infarct. An infarct refers
to an area that had been damaged due to lack of oxygen and parietal
refers to the parietal lobe of the brain. This upper area of
the brain is the least perfused with blood and oxygen in the
first place and is the first place that can be damaged when there
is a lack of oxygen. This could have happened during one of Zach's
episodes (See 9/18/99) or
from being on the bypass
machine during the transplant. The parietal infarct is not
new. We still have the same kid we had when we went into the
hospital this last time, now we just understand more as far as
where the seizures have come from and probably why Zach has regressed
some developmentally since the transplant. Brain tissue never
grows back so it's not something Zach will out grow but being
as young as he is, the brain can often compensate with other
areas and our hope is that in spite of this there will be little
noticable difference with him as he gets older. When this current
ordeal is over we will schedule some follow ups with a Neuro
specialist such as Dr. Lafond to learn more and in the mean time
Zach will just get a new medication (probably Lamictal) to prevent
seizures.
Although we are obviously discourage by the news we have chosen
not to dwell on it and we hope other won't as well. Each new
challenge Zach faces just makes us love him all the more. The
potential for brain injury is always there with pulmonary hypertension
and with any heart or heart/lung transplant and although it's
not something we like to think about, we feel that's important
to bring it out in the open as part of our "total transplant
experience". During the afternoon I watched Zach for about
six hours so Gina could go home for a while. We went for a ride
around the floor in a wagon with our i.v. pole tied to the back
of it. We watched our Thomas the Tank train videos and Zach played
with every toy and book I could find for him. Zach is still a
bright playful regular little two year old. He is eating well
( downed a whole plate of French fries with even more catsup)
and feeling better than he has felt in a week.
Wednesday 11/24/99
Zach is doing well. Today was very uneventful. Kind of a rest
up day for Zach with no blood draws or new medications. He is
no longer getting anything by i.v. Even the Dilantin to prevent
any more seizures is being given by mouth. Zach will have a blood
draw in the morning to determine his Prograf and Dilantin level
since they can effect each other by changing blood levels. Zach
had eaten and drank well today and we were able to go on a couple
of long walks around the floor. Zach even did a great job of
wearing his mask to help prevent against getting sick from the
other kids during our walks. We spent about 1/2 hour talking
with Christie Gormsen and her camera man Christer so watch for
Zach (and Gina & I) on the Channel 2 news on Thanksgiving
day. Zach also had a nice visit from his friend Hannah. Before
she left, Leslie (Boland) Martin our pharmacist when in Sacred
Heart (and my classmate WSU '92) stopped by and gave me a hug
and some words of encouragement. She has worked hard on Zach's
medication issues this week including the potential drug interaction
that was not. Being a retail pharmacist I have gained a new and
greater respect for hospital pharmacists, especially those who
deal with pediatrics and/or acute care.
Thursday 11/25/99
Happy Thanksgiving! Zach is finally home and doing well. The
decision was to discharge him since it would be safer with so
much influenza around the hospital. Shortly after Zach and Gina
left the hospital, an assay came back from a few days ago (it
takes that long to grow the virus so that it can be identified)
that was positive for influenza. Dr. Graves called me a prescription
for Flumadine at work and I called Joan Miller (one of the Stanford
transplant coordinators) at home to discuss it. We decided to
up Zach's Prograf slightly until we get the next level on monday.
We also went ahead and started Zach on the Flumadine just in
case he is just starting the flu instead of getting over it.
Zach's a little fussy tonight but doing well. I think he's just
tired out from this whole experience.
Friday 11/26/99
All continues to be well with Zach. He still has a little cold
but he seems to be feeling better each day and had been playing
on the computer a lot. We had a nice visit today from Zach's
god parents, Paul & Andera Zagelow and their infant son Cage.
Yesterday Zach (and Gina & I) were on the news for the umpteenth
time (At least 6 different times that I can think of). We're
always glad to do it since we feel like it helps make people
think about organ donation and the crew at KREM
2 News who has done the last few stories it always very polite
and patient in spite of the difficulties of working with a two
year old.
Sunday 11/28/99
Zach is finally his old self again. He has been running around
and getting excited by everything from his CD Rom Reader Rabbit
for toddlers, to his Thomas the Tank Engine videos to the Christmas
lights Gina put up today. Zach's doing as good as ever and it's
hard to believe we had such a scare last week. I think the Flumadine
he is on is finally taking care of the influenza A virus he tested
positive for.
Monday 11/29/99
Gina took Zach in for his blood draw this morning. Zach did well
as always...He is very brave! I called Dr. Garabedians office
for the levels but the won't be back until in the morning.
Friday 12/3/99
We had a follow up visit with Dr. Lefond (The Neuro Specialist)
today. Like with all our Dr. appointments we went in early in
the morning. We always have the first appointment of the day
whenever possible to avoid Zach coming in contact with sick kids.
The appointment was brief. We discussed the seizures Zach had
and made plans to look at the MRI at our next appointment. We
started Zach on Lamictal (a seizure medication) with the homes
of tapering him off of the Dilantin once we get the Lamictal
up to a therapeutic dose. The Dilantin increases Prograf levels
and can cause severe gum growth and swelling (gingival hyperplasia)
so we'll be glad if the Lamictal works instead.
After we left Dr. Lefond's office we went for another blood draw
to check Prograf and Dilantin levels and then we went to IHOP.
We always try to take Zach to IHOP after blood draws since he
really likes it there. Bacon and ham...mmmmmmm!
During our appointment Dr. Lafond told us that the seizures
Zach had last week were "Partial Complex". Here is
some information on partial complex seizures (also known as Temporal
Lobe Seizures) from the Epilepsy Association of South Australia:
Temporal Lobe Seizures arise from the temporal lobe of the brain
which is that portion of the brain that lies under the part of
the head we call the temple. They may also sometimes be called
psychomotor seizures because they may occur together with psychological
or psychiatric features.
There are three main groups of causes of temporal lobe seizures.
The first includes people who have known brain damage from birth,
and those who have meningitis, head injuries or other reasons.
The second group includes people who have had prolonged or continuous
seizures (status epilepticus), possibly associated with febrile
(fever) convulsions, earlier in their lives. Frequently, the
third group shows, no cause that can be identified (idiopathic).
The temporal lobe contains an area known as the limbic system
in which the heart, blood vessels, respiration and gastro-intestinal
systems are represented in terms of function. This area also
deals with memory, hearing and smell. When you consider that
all these functions are represented in the temporal lobe, it
is hardly surprising that the symptoms of temporal lobe epilepsy
(complex partial seizures) can be very varied and difficult to
diagnose. Hence the term - complex partial seizures. Often there
are distortions of sensation which may include strange feelings
in the stomach, odd smells, hearing voices or music and sometimes
there may be visual hallucinations. One of the better known distortions
which occurs in temporal lobe seizures is a sensation of familiarity,
of having been there before, which is called deja vu phenomenon.
The person will have an a normal sense of familiarity with a
real situation. There may also be disturbances of speech - not
only does the person have difficulty in talking but may make
remarks which are quite inappropriate at the time. Certain emotional
features such as fear or strangeness may occur, and occasionally
giddiness. A seizure may last a few seconds, a few minutes or
in some cases up to 20 minutes or more, depending on the individual.
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