Sunday, July 17, 2016

Posts from hell week Part V

This place reminds Rhianna of Inception. To get to coffee, according to her, one must go from upper Inception down the spiral stair through lower Inception through the Tunnel of Light into the White Hall to the Atrium (guarded by plastic owls).

Surgery #??? complete: The next leg of the journey has begun. He is now on the VV (veno-veno) support so that his lungs can heal. Still deeply critical condition, still in the thick of the forest but the trees may have thinned just a bit.
Praise God the man next door is verbal now - expressing pain but loud & clear - so hope will spring for that family.
"Rejoice for the steps of the righteous man are ordered by God. In the time of trouble, He will sustain you, He will uphold you, He will lift you up. In the time of trouble, God will carry you, so rejoice your steps are ordered of God"
Taken from Psalm 37:23-24
The morning of the end of a week of this and I feel as if I just spent some quality time in the ring with Laila Ali. Things are sore & hurt that surprise me; I even had a severe Charlie horse in the middle of the night and that has not happened since my last pregnancy. Yet while I feel beat up I also feel taut like a bow strung ready to be released. I would love to find a blog documenting someone else's ordeal with this. I think I'm going to have to do it so that somewhere down the road there will be a wife in my shoes who can Google and find something to relate to.

You are the Bread of Life oh Lord
Broken to set us free
So how could there be any hunger in me
If You are the Bread of Life
You are the Bread of Life
You've overcome the world oh Lord
And given us victory
So how could I fear when trouble is near
If You've overcome the world
You've overcome the world
Wipe every tear away oh Lord
And teach us the song of the Lamb
The promise is true but it's still up to You
To wipe every tear away
Wipe every tear away
Wipe every tear away

These tubes are actually made of clear material. The red coursing through is Pat's blood on the veno to veno Ecmo. (Picture of ecmo, click link)

I had a crisis of hope this afternoon after asking some very scary questions and getting the dark, fearsome answers. Still in the realm of "what if" rather than "this is." Anyhow, Karen shared this with me and it was exactly what I needed:
"While it looks like things are out of control, behind the scenes there is a God who hasn't surrendered His authority." A.W. Tozer
Pat is making slow progress but there are also some realities. If he doesn't make better progress, within days the intubation has to be removed from his mouth and he has to be given a tracheotomy. He has been intubated since July 5th & that throat tube can cause lots of damage. His poor tongue is so cut up & swollen. This is also tricky because there would be a flash of time when one was out and nothing was in. Also, if things don't get much better then conversations will have to begin to happen about the "what if" he is still requiring all this support by the two week mark. He had the first Ecmo surgery on July 6 (I had to look back at posts because I know longer no the day, the time, the week. Time is a blur). The initial stats said 50/50 survival; I had thought we had moved to 60/40, but apparently we are still pretty close to 50/50.
Today he did at least turn his head toward Jenna and me when we were speaking to him about all the grandchildren and how much they want to see him. Since the doctors don't want him moving around at all now & want the lungs to be completely on machine, they gave him a paralytic after this to keep him still. He's getting blood transfusions. He's just a guy who is seriously sick whose body is being run by machines. Basically, he's a cyborg at the moment and that is a very, very painful thing to see.
But, as Karen's quote said, God hasn't surrendered control. If He so wills it, those stats could change to 60/40, 70/30, all the way up to healing and home. It is in His hands and in His authority. I pray that we have a showering of grace and strength to bow to that authority regardless. Please keep praying. Thank you.
Psalms 33:20-22 Our soul waits for the LORD; he is our help and our shield. For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O LORD, be upon us, even as we hope in you.

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