April 16, 2000

Dear Family,

It is Sunday afternoon (about 12:30) and I am sitting in one of the alcove/waiting 
areas on the second floor of the children's hospital here at Stanford. We arrived a 
little earlier than usual today (for a Sunday) because Suzanne's parents are taking 
her out for brunch. Suzanne has rarely left the hospital since arriving here almost 
two months ago, and so we have all been trying to get her out for a change of scenery. 
Pam succeeded in getting her out on Friday afternoon (a trip to Wal-Mart and a 
sandwich at Marie Calendar's).

This morning I put cream cheese on some bagels, preparing a "getaway brunch" for 
Pam and I. Last night I was thinking about Psalm 57/108, and I woke up singing it 
this morning. While Pam was finishing getting ready to go, I read both of those 
versions for us, as well as some of the other Psalms that have been so precious to 
me over the past weeks.

"My heart is steadfast, O God; I will sing, I will sing praises, even with my soul. 
Awake, harp and lyre; I will awaken the dawn! I will give thanks to Thee, O LORD, 
among the peoples; And I will sing praises to Thee among the nations. For Thy 
lovingkindness is great above the heavens; And Thy truth to the skies. Be exalted, 
O God, above the heavens, and Thy glory above all the earth. That Thy beloved may be 
delivered, Save with Thy right hand, and answer me!" - Psalm 108:1-6

Psalm 130 "Out of the depths have I cried to Thee, O Lord"
Psalm 116 "I love the Lord because He hears my voice"
Psalm 115 "Not to us, O LORD, not to us, But to Thy name give glory
Because of Thy lovingkindness, because of Thy faithfulness."

My "Skylar" bookmark has been at Psalm 116 for weeks; this has been my prayer 
for Skylar for a long time now, and I have watched as God has been answering it 
affirmatively. I continue to pray it on Skye's behalf and hope for the day, soon, God 
willing, when I will be able to thank God for His great goodness to us and to Skylar 
in the presence of all of you, His people (v. 14, 17-19).

Pam and I stopped at Starbucks for a coffee (for me) and a tea (for Pam) and then 
we drove looking for a nice quiet scenic place to park and have breakfast. We actually 
wound up on the wrong side of the tracks (East Palo Alto), cruising up and down streets 
where the houses have bars on the windows ("Does that tell you something?" asked Pam). 
We finally found a deserted cul-de-sac with a view of the mountains in the distance, 
and enjoyed bagels, coffee, and tea.

The staff here at the hospital continue to work diligently with Skylar to help 
wean him off of the ventilator. I reported in my last letter that I was somewhat 
discouraged as yesterday began, to find that Skylar's vent oxygen setting had been 
increased to 55%. Well, by the end of the day I took heart as I observed several 
encouraging things.

First, Skylar was awake and alert more and for longer periods yesterday than he 
had been so far. Of course, many of those periods of wakefulness were driven by 
activities that were to Skylar quite unpleasant. For example, at one point the nurse 
and respiratory therapist had to change Skylar's "moustache". This is a fixture (made 
of some special kinds of tape and glue) that extends across his upper lip and is 
anchored on his cheeks. In the middle a couple of lengths of fabric tape extend and 
are spiraled around the ventilator tube in Skylar's mouth, holding it securely in place.

I was encouraged to see that, although this was a very uncomfortable and probably 
at times painful procedure for Skylar, for the most part he was cooperative and did 
not resist the efforts, even though he cried at times. I have a strong sense of 
Skylar's spirit returning, and am made more hopeful when I see him exercise courage.

He has shown no overt tendency to try and pull the tubing out of his throat; this 
encourages me to believe that he has heard, listened to, and understood his mother 
and us as we have explained to him that these painful and uncomfortable things are 
very important for a while; fearful and distressing, yes, but needful to help his 
recovery. His response also encourages me that his intelligence is intact.

One other incident from yesterday; there was a TVCR placed by Skylar's bedside. 
One of his favorite videos, "An Extremely Goofy Movie" was on the screen when Pam 
and I entered the room. Skylar, however, seemed to be sound asleep and so we 
turned the movie off.

We stood by his bed for a few moments, and Skylar awoke. Shortly after awakening, 
he began to try to talk to us; his lips and tongue were moving, of course to no 
effect because of the tube in his throat. In frustration, he began crying. Pam kept 
asking him questions; "Does something hurt? Are you cold?" and so on. Then, in her 
frustration and helplessness to comfort Skylar, Pam also began to weep. I did my 
best to comfort both of them as we kept on trying to ease Skylar's distress.

As it turned out, we did soon discover the source of Skylar's distress; he was 
sad that we had turned off his movie! Try to imagine if you will, what it would be 
like if you were wakeful for the first time after sleeping for many weeks; just how 
hungry you might be for some sound and color and motion. Pam and I were both greatly 
relieved when, after re-starting the movie, Skylar with eyes wide open contentedly 
watched for fifteen or twenty minutes until the movie finished! Yet another indication 
to me that our gracious Lord has preserved Skylar's mind to a great degree.

Finally, in terms of very practical and physical encouragement, before we left 
last night the respiratory therapist worked with Skylar for a while. She made his 
bed vibrate, a treatment intended to help shake loose junk in his lungs and help them 
to open up. She then "suctioned" his bronchial tubes. This is done periodically 
throughout the day. It consists of sliding a long tube down through the middle of 
Skylar's breathing tube and applying a vacuum to draw out any mucous and fluids that 
have accumulated. Before suctioning, the therapist squirts a little saline solution 
down the vent tube to help dissolve and loosen the mucous.

After the vibrating bed treatment, the suctioning drew out quite a lot of "junk" - 
and the therapist was able to reduce Skylar's vent oxygen setting to 48%. Another 
encouragement is that, although Skylar detests the suctioning treatment (imagine, 
if you will, having salt water squirted into your lungs and then having your airway 
obstructed with a tube, even momentarily!) he cooperates in a very important way by 
coughing when asked to. The coughing helps to loosen and remove accumulations of 
mucous, and also indicates to me that Skylar's spirit is returning and working 
towards recovery.

Today Skylar's vent settings are down a little bit more - down to a PEEP of 6 
and oxygen back in the 40's. They had to change his lines today (IV connections, 
replaced in different locations to reduce the possibility of infection). They 
have also hooked up a nebulizer to his ventilator in order to administer some 
medication - broncho-dilators (sp?) and something to help dissolve mucous. Pam 
and I are praying that perhaps they may be able to wean him from the ventilator 
entirely and not have to do a tracheostomy; we don't know whether or not that 
will be possible, but God has been so generous to us we thought we would ask anyway.

One other encouraging thing that I learned is that the "compliance" of Skylar's 
lungs has improved a great deal since he was admitted to ICU. Originally, compliance 
was somewhere between 1 and 3; this morning it was as high as 12. I don't have any 
information right now about what is "normal" - but by comparison, his lungs are 
considerably less stiff than they were at first. Praise God!

If I can send this today, it will be sent between 3 and 4PM. Pam sends her prayers 
for all of you and her appreciation for all of your prayers and letters and 
encouragement. Thank you all so very much for standing with us in so many ways. 
We love you all.

Love in Christ,

Dann and Pam