April 13, 2000

Dear Family,

It is Thursday afternoon and I am in the "playroom" to use the computer.
Thank you for your emails.  We continue to thank and praise God for His
goodness to us and to Skylar.

Last night we left here a little bit late because Nana (Pam) was in the
room with Skylar while they were turning him over on his tummy for the
night, and that was very difficult for him.  He was in pain (his shoulders
are quite sore, and I suspect most of his muscles and joints must be sore)
and he was crying and shaking his head "no" during the process.  Nana could
not bear to leave until Skylar was settled in once more.

Today when we arrived we saw that they had reduced Skylar's ventilator
PEEP once again, to 7.  I have been told before that the target PEEP number
is 4 or 5 when they want to wean someone from a ventilator... so each step
downward is a step closer to that point; however, Skylar has been struggling
today to keep his oxygen saturation up.

Oxygen saturation is measured by an electronic device attached to one of
Skylar's fingers or toes.  The device shines two light frequencies through
his finger, senses the difference in absorbtion between the two, and then
calculates the percentage of oxygen saturation, which should remain at 90%
or better (and the higher the better).

It is agonizing to watch the percentages on the screen sag and sometimes dip
below 90%.  Ususally if they suction some matter out of his breathing tube
the percentages rise again, but as an impatient grandpa I just want them to
go high and remain high.  I have thought about some biblical stories that
have been comforting and encourage my patience; there was a blind man whom
Jesus healed in two stages - his first, partial recovery enabled him to see
"men as trees walking around" - and then a second touch completed the job.
I am encouraged to trust that the Lord will complete his work in Skylar even
though it is not done yet.

Today Skylar has not been awake and aware during the times I have been in his
room, but I'm hoping that during one of my visits (I spend hours elsewhere
working during the day) he will be alert enough to know and enjoy my presence.

Along with your praise and thanks to God for Skylar's progress, please ask
for strength as he starts to exercise muscles that have been dormant for so
long.  Please ask for continued progress toward lower vent settings, for
better oxygen transfer into his blood.  Ask for protection from infections
and neglect and complications.

Please especially ask for courage for Skylar to deal with the pain and
discomfort and fears that come from being bedridden and at the mercy of
what others are doing to/for him.

Thank you for your continued prayers, encouragement, and support.

Love in Christ,

-Dann (for Pam as well)