Sunday, July 17, 2016

Posts from hell week Part VI

We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be. -- C. S. Lewis

Glynis Elizabeth added a collage: Sunrise.
Rushed back to the hospital in the wee hours. This beauty greets us as we hover in these shadowlands. (link to sunrise)

“God has not been trying an experiment on my faith or love in order to find out their quality. He knew it already. It was I who didn’t. In this trial He makes us occupy the dock, the witness box, and the bench all at once. He always knew that my temple was a house of cards. His only way of making me realize the fact was to knock it down.” ~ C.S. Lewis
In the wee hours, Pat went into cardiac arrhythmia, CPR was performed, the paddle was used four times. So far God blessed us with the ability to get here and be by his side and he is having another procedure right now. We wait. Whether he makes it or not is a crap shoot. We gathered around, we prayed, I sang to him. Whatever happens isn't out of God's control and He is more than able to keep us. If Pat goes to be with Jesus, that is his gain. To open his eyes in glory could not be anything but wonderful for Pat because he is a child of the King. If the Lord chooses that Pat somehow stays with us, He can get us through the rough seas and treacherous wilderness. I can see how much of His infinite mercy He has chosen to pour out over me - us - and it is palatable. We're swimming in grace, enveloped in love, and strengthened by that mighty Hand. If I didn't know it before, or thought I knew it and wasn't quite sold, I am now more than ever certain.
Romans 8:38-39
For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.

There is an eye that never sleeps
Beneath the wing of night;
There is an ear that never shuts
When sink the beams of light.
There is an arm that never tires
When human strength gives way;
There is a love that never fails
When earthly loves decay.
That eye is fixed on seraph throngs;
That arm upholds the sky;
That ear is filled with angel songs;
That love is throned on high.
But there’s a power which man can wield
When mortal aid is vain,
That eye, that arm, that love to reach,
That listening ear to gain.
That power is prayer, which soars on high,
Through Jesus, to the throne,
And moves the hand which moves the world,
To bring salvation down.

“We were promised sufferings. They were part of the program. We were even told, ‘Blessed are they that mourn,’ and I accept it. I’ve got nothing that I hadn’t bargained for. Of course it is different when the thing happens to oneself, not to others, and in reality, not imagination.” ~C. S. Lewis
2 Corinthians 4:16-18 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”
Update: Amazingly, I write this and Pat is still with us. When I tore out of the house at the 3am-ish hour of the morning to get to him after being resuscitated once again (CPR and paddle 4X), I thought I was driving to say a final good-bye. And yet, he is still here, hanging in that balance - in the limbo we are coming to know qutie well. One scary procedure and another "should've been fairly simple but wasn't" bloody ordeal, Pat is yet in the twilight of the land of the living. The girls & Ed all got there, Wendy, talked to him on speaker phone by his ear. We prayed over him, we prayed together. We got to be with each other and support each other through this really tough morning. Everyone got to spend some private moments with him. I read to him from Revelations and from The Last Battle, first time I have ever made it through the last chapter and didn't cry and make it unintelligible. We sat in conference with the head doctors, talked to others at his bedside. Beth& JoAnn came and gave us strength. He's stable and we had to come home and sleep. What the night or tomorrow will bring is unknown.
On the way home we saw this license plate: Deut 30:6. That reads "“Moreover the Lord your God will circumcise your heart and the heart of your descendants, to love the Lord your God with all your heart and with all your soul, so that you may live."
1 John 4:4 “You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world.”
Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
"They that love beyond the world cannot be separated by it. Death cannot kill what never dies.” ~ Williams Penn
"He whose head is in heaven need not fear to put his feet into the grave.” ~ Matthew Henry
“Has this world been so kind to you that you should leave with regret? There are better things ahead than any we leave behind.” ~ C.S. Lewis

Glynis Elizabeth added a collage — with Rhianna Sweet and 3 others.
Farewell, my lover, my husband, my friend, father of our children, loving Poppy, king of our castle, man who could fix everything. You are in the arms of Jesus, but I'll miss you so very much. I love you.
Patrick 1961 -2016 (link to photos)

I found this doodle of Pat as the big heart man and me the curly haired heart man in Patrick's pocket Bible. What a beautiful message to leave me. (After arriving home, devastated, I found the picture at the link sitting in his Bible, recently doodled). 

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.




Posts from hell week Part IV

Just in the past couple of weeks Pat told me how he loved this song & identified with it and he felt it was his message to me.
I am insensitive, I have a tendency
To pay more attention to the things that I need
Sometimes I drink to much, sometimes I test your trust,
Sometimes I don't know why you're staying with me
I'm hard to love, hard to love,
Oh I don't make it easy,
I couldn't do it if I stood where you stood
I'm hard to love, hard to love,
You say that you need me,
I don't deserve it but I love that you love me good
I am a short fuse, I am a wrecking ball
Crashing into your heart like I do
You're like a Sunday morning full of grace and full of Jesus
And I wish that I could be more like you
(Except for the first sentence or so about drinking, lol, he rarely ever even has a glass of wine).
Played this for Pat & got a good physical response. His favorite version ever was Claude Frye at Tabernacle of Praise singing this acoustic. I think Ed & Luke need to sing it for him...and Nick if he sings.

A plea: If you smoke, stop. If you eat crap all the time, stop. If you have people in your life cajoling, urging, nagging, and pleading with you to take care of yourself and give up this junk, LISTEN. You are not immortal, you will not get a free pass. A cigarette is not worth the pain that comes as its end result. Provolone, Taylor Ham and pepperoni pizzas are not worth the horror I am seeing: A place filled with people who wouldn't listen, hooked up to machines, wires and needles all over their bodies. This attitude that you "have to die from something" is ludicrous - unless you are some kind of masochist and love torture, or you are a sadist who enjoys causing your family pain. Heart disease is the leading PREVENTABLE cause of death

h for the next step. They removed several liters of built up fluids. He will be going to the OR today at some point to have the Ecmo switched to lung only support (although it is getting late & the nurse expressed the OR was busy so it could possibly be tomorrow). The Impella is down now to a really low setting. If he does well on lung-only & improves. The next step is respirator only. And so forth. Very positive progress. Slow but steady.
The nephrologist also came in & explained the kidney situation & how what is happening is common to this extensive heart injury. He said kidneys are very good about healing, again, it will just take time.
I see 21 staples on one opening. I don't think I can even count the other needles, tubes and ports that are all over him. Down the nose & throat. Both sides of the neck, the groin, it is just wildly terrifying and yet it is giving us a chance to keep him here with us. People are taking about how the Republican convention  will be right downtown very soon. 
Can I dare hope for a miraculous healing to get out of here before then? The traffic will be insane.
Psalm 41:2-3
The Lord protects and preserves them—
they are counted among the blessed in the land—
he does not give them over to the desire of their foes.
The Lord sustains them on their sickbed
and restores them from their bed of illness.

Next to Pat's room is another man in terrible condition. Yesterday Erin & I listened to his daughter singing this to him. It was one of the myriads of small blessings during this trial. If you do not have this hope, this surety in your life, talk to me...
I can only imagine what it will be like
When I walk, by your side
I can only imagine what my eyes will see
When you face is before me
I can only imagine
I can only imagine
Surrounded by you glory
What will my heart feel
Will I dance for you Jesus
Or in awe of you be still
Will I stand in your presence
Or to my knees will I fall
Will I sing hallelujah
Will I be able to speak at all
I can only imagine
I can only imagine
I can only imagine when that day comes
When I find myself standing in the son
I can only imagine when all I would do is forever
Forever worship you
I can only imagine
I can only imagine
Surrounded by your glory
What will my heart feel
Will I dance for you Jesus
Or in awe of you be still
Will I stand in your presence
Or to my knees will I fall
Will I…

Courage is fear that has said its prayers.~ Dorothy Bernard

This is what Pat looked like on day 3 (Tuesday) with the addition of things up his nose, down his throat and stuck in his neck. Even his nose was swollen. If you don't know, this is a Vogon (from Hitchhiker's Guide to the Galaxy). Vogons recite long, long, long dull poetry. With the tube down his throat, Pat was prevented from any poetry recitation. (Picture of Vogon)
I'm sitting here waiting while Pat is in the operating room getting switched from one Ecmo to the lung only Ecmo support (which is good thing). I thought I'd just share some random stuff that has filled the days lately:
-Kindred spirits are everywhere. Yesterday I spent the better part of 10 hours with Felicity, Pat's nurse for the day. She & I discovered quickly we were the same age with much in common. Pat was shivering so the assistant turned up the Ecmo adjustment that heats the blood. After a while she told us that it said, "the blood is getting too hot, it wants me to turn it down." I said, "Then you mean he is hot-blooded?" Felicity & I looked at each other and burst into Foreigner's "I'm hot-blooded, check it and see. I got a fever of a 103. C'mon baby, can you do more than dance..." You can't buy that kind of instant mind-meld with someone. Look around you - kindred spirits are everywhere.
-Felicity was having neck pain. I wound up teaching a group of nurses and other specialists yoga asanas to loosen things up. It ws fun seeing people across the way showing other people what to do. Surgical cardiac ICU is a very stressful place, lots of tense muscles on these wonderful, beautiful people.
-I ran into a woman here who I substitute for & we have always just hit it off. Sadly, she was here for a problem she has been sharing with me as the reason I needed to come in for her. We were able to pray together for her surgery & all that might follow. Please remember her, Mrs. McP with young kids & a husband who need her to be okay.
-I was able to talk to my neighbor about Jesus & we both cried. He is going through a very difficult & terrifying time. Please lift him up. He needs divine intervention.
-My daughter, Jenna, has helped me with some semblance of normalcy by walking the dogs with me twice late, late late. It was such a blessing to walk & talk as if the world were still turning as usual.
-My daughters are all under extreme stress with this and God has been blessing them with helpers. As Mr. Rogers said, in times of tragedy, there are still helpers.
-My dogs; Sasha is a collie, that said she has her own mind & her own agenda. She has a system where she guards the upstairs, stationing herself either on our bed or on the top of the stairs. Charlie is required to guard the downstairs & to come tell her if she needs to come down (this is an elaborate display, involving up & down the stairs at least twice, a series of barks that say what is going on). WELL, Sasha has begun to force Charlie to do the upstairs (easier) job while she guards the downstairs. He is not thrilled with the change but she is calling the shots. I watched her command him, it's just amazing the level of communication.
-A crazy snobby woman in an Audi SUV nearly broad-sided me in the parking garage. When i honked & stopped in horror, she didn't even acknowledge me - while my heart was beating wildly she...maneuvered herself to continue cutting me off. Lest I seem too holy, I followed her, scaring the tar out of her, all the way past perfectly good parking spaces to the upper deck where I parked far so she'd think it safe...then went to her & yelled at her through her window and took very dramatic pictures of her license plate. There are people with little children in this parking garage, there are people all stressed, all scared, coming to see family, to go to cancer doctors, etc, no one needs the hassle, frustration and nightmare of a parking garage accident especially when they are already under stress. DRIVE SLOWLY and be courteous in parking garages!!! (And everywhere, please).
-Pat always liked to watching mushy movies with me and he always got all sappy and said that he & I were like the Notebook - as well as Wesley & Buttercup in the Princess Bride. Over & over I think of Wesley being "mostly dead" but true love brings him through. 
-What does it matter if you gain the whole world and lose your own soul? There is nothing so important here that cannot be taken away from you - there are no people, possessions, dreams that cannot be forever changed in the blink of an eye. But there is assurance and there is hope. There is a hiding place, a shelter from the storm, there is a Mighty King who doesn't just want to be your Savior, He wants to be your Lord.