We are not sure when he will be extubated and allowed to wake up. In order to be extubated, his swelling has to go down, particularly in the throat area. The ENT docs have to come and give their okay. The ICU and heme/onc team were talking about possibly doing that today but then realized that he needs to first go to surgery to have his central line put in (where he will receive all his chemo; his current one is temporary). In order to go to surgery, we have to have the Infectious Disease docs give the okay on his infection so no new bacteria is introduction into his system during surgery.
So we wait. Wait for more healing, wait for more doctors.
He's opening his eyes a lot, which is beautiful and agonizing. He can't feel anything and won't remember any of this (due to drugs, and age of course) but to me he looks confused. Sometimes he'll cry during exams but no sound can come out, his face will just scrunch up and tears will come down. They'll probably increase his sedation soon since they realized that he has to have surgery... which will be a comfort to me.
Watts is laying calmly at the moment, with his big eyes open, as Michael plays over him:
Amazing Grace, how sweet
the sound,
That saved a wretch like me....
I once was lost but now am found,
Was blind, but now, I see.
T'was Grace that taught...
my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear...
the hour I first believed.
Through many dangers, toils and snares...
we have already come.
T'was Grace that brought us safe thus far...
and Grace will lead us home.
The Lord has promised good to me...
His word my hope secures.
He will my shield and portion be...
as long as life endures.
When we've been here ten thousand years...
bright shining as the sun.
We've no less days to sing God's praise...
then when we've first begun.
That saved a wretch like me....
I once was lost but now am found,
Was blind, but now, I see.
T'was Grace that taught...
my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear...
the hour I first believed.
Through many dangers, toils and snares...
we have already come.
T'was Grace that brought us safe thus far...
and Grace will lead us home.
The Lord has promised good to me...
His word my hope secures.
He will my shield and portion be...
as long as life endures.
When we've been here ten thousand years...
bright shining as the sun.
We've no less days to sing God's praise...
then when we've first begun.
thanks for sharing an update - it helps to know specific ways to pray for sweet baby Watts. I am sure hearing music from Michael is helping him immensely. "and Grace, my fears, relieved". Amen.
ReplyDeletemuch love to you all.
Oh Hannah, my heart breaks for you. Psalm 126:5 keeps coming to my mind, though, every time I think about y'all: "Those who sow with tears will reap with songs of joy."
ReplyDeleteI don't know if Michael came home from the Bifrost conference with their new album, but #7 is based on Psalm 126, and the chorus is beautiful:
"Although we are weeping,
Lord help us keep sowing
The seed of Your Kingdom
For the day you will reap them!
Your sheaves we will carry
Lord, please do not tarry!
All those who sow weeping
Will go out with songs of Joy!"
Praying that you will know joy even though you are in a time of uncertainty and weeping. Love you.
We do not know what we should say or know how bad we feel to read this and just try to understand what to do so Hazel and I send to you all of our love and we well be in prayer for you all, we love the Van Patters very much, OK?
ReplyDeleteYes thanks for updating. I check frequently and pray with each entry. Love you all.
ReplyDeleteHannah - I am cousins with Jennifer Thoms, who is friends with one of your cousins. At the beginning of April my son, Eli, who is 3 was diagnosed with B-ALL. My heart breaks for you as a mother because I know all the emotions you are experiencing but at the same time my spirit rejoices because as a fellow mother of faith I know God has got this and is holding Watts and Eli in His hand. Here is my email, MaryAnne@livingbyfaith.com, please use it anytime, I know for myself even though I am trusting God there are still days I need to vent. I am praying for your precious boy sometimes through tears but always in faith, because the name of Jesus is bigger than the name Leukemia.
ReplyDeleteMy husband and I have been riding God's wave of grace and joy and we pray that you and your husband have that same experience.
The Fruit of your womb is blessed (divinely favored)!
Mary Anne
PS - If this comment shows up twice, sorry, I am having technically problems this morning:)