Saturday, April 22, 2000

Dear Family,

Skylar is still doing well, but yesterday (Friday) and today have been very distressing 
to me. There have been multiple failed attempts to place an NG tube (nasal-gastric tube 
used to feed Skylar) properly; each attempt has been with great pain and distress for 
Skylar, and so far all attempts have been for naught.

Last night I had to help hold Skylar still while a nurse tried twice to push this tube 
up through Skylar's nostril and down into his stomach. It is so very difficult to have 
to restrain my grandson from defending himself against such an assault! Even with various 
sedative medications he was all too aware of what was going on, and was struggling to 
avoid it.

This morning, with Skylar wide awake, I had to hold him while the nurse removed the 
same, ineffective tube. Both last night and this morning I was in tears; Skylar's actions 
and his attitude toward me showed me that he felt betrayed. However, I think when he saw 
me crying he began to realize that I was not doing this willingly or with any pleasure.

I think today they will try to put Skylar to sleep and will use some kind of scoping 
device to place the tube. The end of the tube must be placed past Skylar's stomach into 
his duodenym (sp?) so that the food will not be in the stomach where it might be 
regurgitated into Skylar's lungs. It grieves me to watch all of this; I so desire that
Skylar would be able to come off of the ventilator and begin to be able to breath and
eat more normally!

And so, I thought I would try to enumerate the specific answers to prayer which God 
has so graciously provided so far in order to remind myself of the lovingkindness of 
God and of His complete control of all things:

* God has saved Skylar from what appeared to be certain death; while many others were 
dying around him, Skylar still lives.
* God has healed Skylar's liver of VOD (veinous occlusive disease) and kept his other 
vital organs working well.
* The Lord has enabled Skylar to be awakened from his long sleep and to know that Mama, 
Nana, and Papa are nearby caring for him.
* God has greatly improved Skylar's skin condition.
* Skylar's mind and brain seem to be intact and undamaged.
* Skylar's eyes are working to a great degree.
* God has helped Skylar to cooperate amazingly well; Skye has not tried to pull out any 
of his tubes, even though they are uncomfortable and distressing to him.
* God has continued to improve Skylar's lung ability, with most adjustments to the 
ventilator over the last couple of weeks being in the direction of reducing pressures, 
rates, etc.
* The staff and doctors have been confounded; I have heard the word "miracle" more than 
once with reference to Skylar.
* Day by day, God has increased Skylar's strength and coordination.
* God has provided the means for me to work and live for a season while being nearby to 
comfort and encourage Skylar.
* God has reduced Skylar's fevers and protected him from serious fungal and other 
infections.
* God has increased Skylar's white, red, and platelet blood counts.
* Skylar and I have brought one another smiles and laughter.
* Skylar remembers and knows who Jesus is during my daily talks with him.

Yesterday Skylar and I were playing "catch" with a rubber examination glove that I had 
inflated like a balloon. I would throw it to him, and he would throw it or kick it back 
to me! Good fun and good exercise.

I am sure that there are many other answers to prayer which I am forgetting at this 
moment, as well as many things that God has done behind the scenes, without my ability 
to observe, which have been necessary and sufficient to save Skylar's life.

And so, what shall I offer the Lord for all of His benefits that He has given me? I will 
lift up the cup of salvation and call on the Name of the Lord. (Psalm 116). God has truly 
been good and gracious to me far beyond any reasonable expectations and infinitely beyond 
anything I could ever deserve.

Thank You, Thank You! so very much Lord, for Your faithfulness and all of your many 
kindesses to me and my family. Thank you for bringing Skylar this far; farther and faster 
than any of the doctors dared to imagine. Lord, please help me to be patient as You 
complete Your good work in Skylar; but please nevertheless hasten the moment
when Skylar can be released from the bonds of tubing and machinery! Thank you that 
Skylar is in Your perfectly capable and loving hands.

And, my family of brothers and sisters of "like precious faith" - thank you for your 
constancy in caring and praying for Skylar and for us. Please ask the Lord to protect 
Skylar from any further mistakes or distresses, and to raise him up from his bed of 
weakness to be able to breath, run, and play again very, very soon.

With love in the Lord,

-Dann (for Pam as well)

PS - Some good news - they came with a team of specialists today with an "endoscope" 
(a device for looking inside of Skylar's stomach). Using the endoscope, they were able 
to successfully place the NG tube. A while ago, the X-Ray man came by and took an X-Ray, 
which they will use to make a final adjustment to the position of the tube so they can 
start feeding Skylar again. I praise the Lord that this is now in place again. Please pray 
that it will stay in place (for as long as it is needed) and that there won't be any 
more mishaps.

Skylar has been awake since the procedure and he seems to be just fine. We have been 
playing and "talking" again. After I mail this, I will go back and tell him the second 
story in the Flying House series. I told him the first story the other day. I am delighted 
that he enjoys them. (if you want to read the stories, you can find links to them from my 
website or from Skylar's website). He also frequently asks me to sing "The Ballad of the 
Flying House". When he grows up, I think he and his brother will help me to build one! :)