April 7, 2000

Dear Family,

It is around 3:00 PM on Friday afternoon, April 7th.  I am writing
to you as I do most often from the children's hospital at Stanford,
where during a brief time window I can sometimes use an internet-
connected computer in the children's playroom.

I have received several responses from members of churches involved
in the process of forming FIRE (Fellowship of Independent Reformed
Evangelicals) asking of Skylar's progress, and so I am copying this
message to the FIRE mailing list as well.  Along with it, my deep
gratitude for your prayers and inquiries.

The last couple of days have been very difficult for me as Skylar
experienced some setbacks and increases in his ventilator settings.
I think my lowest point came yesterday when, while I was standing by
his bedside, Skylar's nurse noticed some blood in the urine output
in his catheter line.  My heart sank to my feet; Skylar only has one
kidney, and I thought the blood might be indicating some damage to it.
Added to that, his ventilator setting was at a PEEP of 11 and an oxygen
level of 75%.  I began to fear the spectre of "multiple organ failure"
added to the discouragement of a lack of progress in attempts to wean him
from the ventilator.  And so in my fear and discouragement, I "fled to the
Rock that is higher than I" and laid out for Him in plain view my dread
and my fear and my desperate petitions for aid.

I had a discussion with one of the respiratory therapists here today.  He
was kind enough to answer several questions that I had.  One important
question had to do with oxygen toxicity.  I have heard often that high levels
of oxygen for long periods of time can be quite toxic.  I asked him exactly
what that means.  He told me that the high oxygen level creates free radicals
which can damage lung tissue and cause scarring and stiffness.  This results
in reduced permeability of the lungs, further reducing the ability of oxygen
to pass from the air into the bloodstream.  Stiffness makes it more difficult
for the lungs to expand and contract.  Neither effect is good.

And so I have been pleading with the Lord to increase Skylar's ability to
assimilate oxygen into his blood.  This morning it was with great praise and
gratitude that upon my arrival at Skylar's room, I found him in a face-down
position with good blood oxygen saturation and a reduced breath rate (20
breaths per minute).  I sang him some good morning songs (Psalm 5, Psalm 62,
Psalm 116) and "read" Psalm 23 to him.  The ventilator that is supporting
his life does not always show all parameters on the screen; and so I was
unable to see the ventilator oxygen setting.  However, my daughter-in-law
came to the room a few minutes later and I could scarcely believe my ears
when she told me that the oxygen setting had been reduced to 45%!  I was so
thankful to God for this very needful improvement!

The respiratory therapist also told me that an oxygen level of 45% for a
child of Skylar's size is not toxic.  Thank God with me for this improvement!

Early this afternoon, Pam and Suzanne and I sat in another "care meeting"
with the doctor who is in charge of the Pediatric ICU today, as well as
Skylar's oncologist, nurse practitioner, and a half dozen other doctors and
therapists involved in Skylar's care.  I learned quite a bit more about how
things are going in their eyes and also about some of the pending decisions
about Skylar's treatment.

In summary, they feel that in spite of some downs as well as ups during the
past week, the trend is one of gradual improvement.  This was encouraging to
hear; they did caution us, however, that as time goes by with Skylar in a
condition of having many tubes inserted and much equipment attached, there is
an ever increasing chance of infection.

As far as installing a "traech tube" (sp?) goes, there are both pros and cons
to that option; it would allow him to wake up and become more active, which
would be very important and good for him; however, that benefit is balanced
by the risk of lung damage caused by excessive pressure.  The pressure now
being delivered by the ventilator right now in itself is not extreme, but if
Skylar is awake and should cough at the moment the ventilator is pushing air
into his lungs, the combined pressures could cause damage.  And so, the
medical staff are debating when and whether to perform a tracheostomy.  This
decision is further complicated by the fact that Skylar's immune system is
still very compromised from the bone marrow transplant.

I also learned something about ARDS (Adult Respiratory Distress Syndrome),
which is how Skylar's lung condition is categorized.  This is a disease
condition which is not at all well understood; there has been very little
success in developing any kind of methods to treat it.  It consists largely
of inflamation of the lung tissues and engorgement with excess fluids caused
by the body reacting to some insult or injury (smoke inhalation, trauma,
toxic chemotherapy chemicals).

And so, the prayer requests of the day:  First and foremost, thanksgiving to
the Lord for the good reduction in the oxygen setting on the vent.  Thank
you, Lord, you have set my feet in a wider place today and have comforted me
by your substantial help to Skylar!

Second, that the condition of Skylar's lungs continue to improve, to open up,
to assimilate oxygen well, to reduce excess fluids and inflamation.

Third, that the medical staff be given great wisdom in their treatment
decisions regarding Skylar.

Fourth, that there be no damage to Skylar's kidney and that his kidney and
other organs continue to function well. (At present the doctors assume that
the blood, which stopped, was only an irritation from the catheter).

Pam and I hope to take a drive to Half Moon Bay tomorrow morning.  This will
let Skylar's other grandparents and his brother Chris have an uninterrupted
visit with Skylar and will give us some needed fresh air.

Thank you all so very much, Grace Bible Church family, FIRE churches, relatives
and friends all around the globe, for your continued prayers and petitions for
Skylar's health and recovery.  I am profoundly grateful to God for all of you.

With love,

Dann (for Pam as well)