Tuesday, April 18, 2000

Dear Family,

It is Tuesday afternoon here at the Stanford children's hospital in Palo Alto. 
I am rejoicing and counting my blessings today even as I consider God's goodness 
to Skylar and to us.

When I arrived today, Skylar's ventilator settings were still the same (45% oxygen, 
PEEP of 5) and he was doing OK after a good night. He was watching his "Goofy" movie 
again (one of his favorites). Suzanne told me that he had been awake for about an hour. 
I greeted him and he held and squeezed my hand to greet me. He tried to tell me 
something; as near as I could figure, he wanted me to watch his movie with him, so I 
did for a while (although he quickly fell asleep).

I sang him a few "good morning" songs even though he was sleeping. Richard, one of the 
chaplains here, came by for a visit. He has been delighted to see Skylar's progress; he 
all too often sees things go the other way and must be on hand to comfort and aid 
families grieving over the d-e-a-t-h of their children.

By the way, I'm sure you noticed how I spelled d-e-a-t-h. This is based on a discovery 
I made yesterday which needs an explanation.

During the past several weeks, I have been bemused from time to time when, as I have 
reviewed messages sent to the list, I have discovered puzzling gaps and apparently 
"dropped" words. I attributed these variously to either errors or carelessness on my 
part, or to the "usual suspect", Microsoft "software". Yesterday, however, I was 
reviewing some older messages that Chris has been kind enough to post on Skylar's 
website at:

http://skylar.cjb.net

and I suddenly saw a pattern. The missing words were words like d-i-e-d, u-r-i-n-a-t-e, 
and other words that one might not wish to have a child use or read carelessly. Suddenly 
a light turned on in my head! I have been doing most of my emailing from computers in the 
"playroom", computers that are primarily intended for the use of children. I am certain 
that there must be some file or network "filtering" software in place that has been 
censoring my mail, unbeknownst to me up until now!

And so, I apologize for what must have often seemed to you all to be very mysterious 
wordings and phrasings and inexplicable gaps in my writing. I am glad that I've discovered 
the truth of the situation and I hope someday to go back to all the stuff posted on 
Skylar's website and remedy the gaps.

I was working in the dayroom today and Pam came in and told me that they had reduced 
Skylar's PEEP to 4! I was so thankful! When I visited him again about a half hour ago, 
it was still at 4 and his oxygen saturation, although somewhat low, was still staying 
within acceptable limits. I can see by observing the ventilator screen that he is 
initiating a lot of breaths on his own now, one of the things that is necessary in 
preparation for weaning him off of the ventilator.

His fevers have been absent since Sunday when they moved his IV lines, removing older 
ones that had been in for some time and may well have been the site of some fever-causing 
infections.

Skye had a small amount of blood in his u-r-i-n-e yesterday, which we pray was from some 
minor residual irritation where the catheter was removed. Thank you for all your prayers; 
please pray that God will now complete the good work He has begun by enabling Skylar to 
have the ventilator removed completely. Praise God with us for His great lovingkindness!

With much love in the Lord,

-Dann (for us all)