Sunday, July 17, 2016

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.

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Posts from hell week Part III

When the darkness closes in, still I will say Blessed be the name of the Lord, blessed be Your glorious Name
You give and take away, my heart will choose to say Blessed be Your Name

I honestly don't know where we would be without the Lord. And I say that with full knowledge that Pat could have died and could still die. We will all die someday. That is neither here nor there in the scheme of things because I know beyond a shadow of doubt exactly where Pat will be should all these efforts be in vain. Faith is not dependent on sunshine & roses, on getting what you think is right. It's about knowing Who is in charge and having confidence in Him. It's knowing Who will hold you up through tears and trials; when our faith is weak, He is there. I can honestly stay He has sustained us through so very much both now and in the past. I can testify He is not some far away God who does not care. We know Who we "have believed in and are persuaded that He is able to keep what we have committed unto Him against that day." 2 Timothy 1:2
Blessed be your name
In the land that is plentiful
Where your streams of abundance flow
Blessed be your name
And blessed be your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be your name
Every blessing you pour out I'll
Turn back to praise
And when the darkness closes in, lord
Still i will say
Blessed be the name of the lord
Blessed be your name
Blessed be the name of the lord
Blessed be your glorious name
Blessed be your name
When the sun's shining down on me
When the world's "all as it should be"
Blessed be you name
And blessed be your name
On the road marked with suffering
Though there's pain in the offering
Blessed be your name
You give and take away...

Things:
-I'm stressed out & the drivers in Warrensville Heights must have gotten on my last nerve. My daughter found my road rage pretty entertaining. Apparently I growl, hiss and very clearly annunciate. Kind of like a Klingon.
-I went home last night to sleep - and to ugly cry, wail and all. My dogs - large dogs - dove on top of me, licking my face, pinning me down. They slept on top of me all night.
-The evil cat barred my way in the hall like a bridge troll. As I attempted to walk past she attacked. Somehow restraint prevented me from taking it all out on her - I hissed back and let her hide.
-In the said town of rude drivers there is an extreme number of hair salons.

His mercies are new every morning. In the midst of this trial, I was offered the job I really felt the Lord wanted me in. I will be teaching sixth grade and get to work with the awesome Julie! Praise God!
I shared my joy with my friend, Rhonda - who blessed me so much this year as a mentor & friend - she shared this with me:
“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18 ESV


Well no matter who you are and no matter what you've done
There will come a time when you can't make it on your own
And in your hour of desperation
Know you're not the only one
Prayin', "lord above, I need a miracle
I need a miracle"

Thursday morning: Pat is stable in critical condition. The Ecmo machine has been keeping him going & he has responded well to small changes meant to slowly wean him off. Survival rate is 50% & in his favor he is young & showing good response. He has an Impella device helping his left ventricle to work & that has also slowly been adjusted down for his heart to try to work on its own (with favorable response). His lungs sustained damage in the ability to oxygenate blood so now the top focus will be to monitor their ability to start doing their job again. Neurologically, he is making appropriate responses & can weakly wiggle toes , squeeze a hand, when asked when sedation is low. It is a slow process with transplant the remaining alternative should this fail. So keep the prayers coming & praise God for His goodness.
I'm just going to add that this is the start of day 5 not hearing his voice. Since late September 1982, not a day has gone by without talking to him. I'm listening to voicemails which I'm so glad I hadn't cleared.
From Psalm 51: "Create in me a clean heart, O God, and put a new and right spirit within me. Do not cast me away from your presence, and do not take your Holy Spirit from me. Restore to me the joy of your salvation, and sustain in me a willing spirit."
Psalm 103:2-4 "Praise the Lord, O my soul, and forget not all His benefits, Who forgives all your sins and heals all your diseases, Who ransoms your soul from the pit and crowns you with love and compassion."


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Posts from hell week Part II

fered major damage. He will likely have a weakened heart that cannot fully recover. However, I'm hoping his heart surprises us and fights to recover.
-Dependent on how things go over time, there are already Plan B & Plan C such as transplant
-So the prayer request - healing, particularly to meet oxygen goals, be okay off ventilation, and for recovery and strengthening of his heart. Of course, that he would be in the living 50%.
Thank you. Our God is great and mighty.

Things seem brighter when you have finally had a shower.

Afternoon update: Fever 102. Kidney functioning declining. Aspiration pneumonia. His SWAN catheter shows good ‪#‎s‬ and so even if the Lasix hasn't led to much urine output, they want him not dried out for the Impella & for the pneumonia. They did tell me if need be they can do dialysis. If I thought this was going to be something where he had surgery & then slow but steady progress I was sadly mistaken. Overall there is no progress. Some #s are better but some others are worse. But he is still here and I am grateful.
Sunday morning we were at church together, enjoyed chatting over our lunch, rode out to look at furniture, laughed over how we threw out the old furniture before buying the new, he did his yard work that he loves doing, grilled... It was just a day. A sweet normal day together. Things can change so rapidly. It is so cliche but make sure you appreciate the time you spend with your loved ones. Say "I love you." Smile. Be thankful. Because you really do not know what the next day or even hour will bring.

5 July at 22:02
YouTube
One of our songs....
It's all breaking down
Crushed into the ground
But we're gonna see it through together

UPDATE: So his kidneys have been getting worse and they having been constantly having issues with his blood gases. This is about to get real crazy and serious. They have to stabilize him for travel. So he is going to be going to surgical ICU for this and has like five minutes:
"The ECMO machine will drain the blood from the vein, add the oxygen and remove the carbon dioxide, warm the blood and then return the blood to the artery and “pump” the blood through the body. This method allows the blood to “bypass” the heart and lungs, allowing them to rest and get better."
He may also be getting dialysis soon.
If they can get him there, this could save him by giving everything rest and healing time. The transport is tricky so it could also go badly.
Still I will praise HIM.

Praise God, he is successfully through surgery and doing very well. God is good.

Update: Dialysis starting soon, not permanent. Ecmo doing its job and many meds have been greatly reduced. Neurologically doing fine. God has shown Himself in so many ways through all of this. We are overwhelmed by the amazing love everyone has shown us and truly thankfully for the blessing of your prayers and support.
To the God who does exceedingly abundantly above all that we ask or dare to think possible, to Him be all the glory now and forever

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Posts from the week of hell Part I

Pat had a major heart attack during surgery, blocked artery is open with a stint, lots of damage. Went into pulmonary edema, fluid backed up into his lungs, he is being treated for that and is on a breathing ventilator. It will be touch and go the next 3-5 days. He will be lighted sedated, and in ICU. Please pray. We are not ready to lose him.

Update: Three hospitals, two life flights and we are at the best cardiac unit in the state. Pat will be having a very special procedure done in an hour in the cath lab, his third. A pump will be placed up inside his heart to do the work so the heart muscle, which is barely working half way, can rest & heal. The doctors/nurses at every hospital have been kind, informative and genuinely compassionate. Pat is very strong & he is a fighter. We have been blessed by your prayers and appreciate the love and concern so very much. We ask that you would keep lifting him up.
A big thanks to Pastor David, Fred & Beth Green, and Frank Pignaloso who came to watch and pray with us. God has given us such a wonderful church family.

Update: Pat's state of the art Impella pump is installed. A representative from the manufacturer is here and helps calibrate it just right. It has like a vacuum that spins 40,000 times a minute & throws the blood from the LV to where it is supposed to go. This rests the heart so it can heal. This team of doctors & nurses is clearly the best. His kidneys, so far, have been doing what they should. He is heavily sedated but could respond to simple directions when they lightened it to test. The girls went home for the night. There are men here doing laps with their IV poles that I was told looked like him him a few days ago.
James 5:14-15 Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. The prayer of a righteous person has great power as it is working

Where's Miracle Max and a chocolate covered something to bring my husband back from the brink of mostly dead for true love? We still have castles to storm & I always need you to rescue me.
"Sonny, true love is the greatest thing in the world - except for a nice MLT - mutton, lettuce, and tomato sandwich, where the mutton is nice and lean and the tomatoes are ripe"

Quite possibly the most uncomfortable "lounge" chair ever. I did sleep a little bit but wow! Woke up with various body parts tingling and numb.
5 July at 09:34 · 
Update from the team of doctors: 
-Still critical. 50% of patients in his condition don't make it, 50% do. Only time will tell. However, because of certain progresses they are cautiously optimistic. 
-A pulmonary team is now involved because he is intubated but is requiring a lot of oxygen. He is being treated for pneumonia (probably developed when he coded & had to be resuscitated). The goal is to get him off all that oxygen and eventually off the ventilator. 
-His heart suffered major damage. He will likely have a weakened heart that cannot fully recover. However, I'm hoping his heart surprises us and fights to recover.
-Dependent on how things go over time, there are already Plan B & Plan C such as transplant 

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Sunday, July 10, 2016

He hangs by a thread and I run in circles below

Later today, I think I will compile my Facebook posts for the past week and copy them here. One day I will want to go back, I think I might forget, become comfortable and  need to see what it was like to be in this place day to day.

This is a marathon, not a sprint - I was told this several times by several members of the medical team.  Good analogy for me because I still clearly remember my own trail marathon journey.

On a chilly October morning I started fresh, primed, on edge for the 26.2 miles ahead of us. Nervous, scared but ready to conquer.  We set off in the dark with a "fun" train ride from the parking at the end to the start.  My friend had a sick stomach that day, so we were at the bathrooms quite a bit. Some people didn't even use the bathrooms - men and women, just squatted or stood in the woods a bit closer to not out of sight than to barely out of sight for decency. I could never do that - I'd probably burst first rather than squat in front of a couple of hundred onlookers.

You start on the marathon with your fresh legs, your ready mindset, your drive to succeed. Legs pound, one foot in front of the next and you build up a rhythm which propels you onward. Moment by moment you know that goal is getting closer. One mile, two miles, piece of cake, you've done a million 5Ks before. Six miles, seven, yeah, you've done 10Ks and heck, you've even done that nine-miler. You've got this. Something happens though - even though you've done your share of practice runs, the air is different, where you are is different, this is a whole new animal. There are things to be taken care of - like your friend's sick stomach means  stop at every port-a-john along the way.  The newer running shoes you have on are too big - you took the wrong advice and bought a pair a half size loose thanks to the running friend who gave you sock and shoe advice. The looseness of the shoes is starting to chafe. 12 miles, 15 miles. Blisters are forming. They are forming, they are popping, forming, popping, forming popping. Your feet feel like beef being run through  grinder.

It's a trail marathon, no big crowds of onlookers, the bathroom stops and such have you lost from the pack and you & your buddy take a wrong turn and find yourself off the right path. A cyclist tells you a mile out you're the wrong way. You back track. Now your marathon will be longer than everyone else's marathon. Your bloody feet thank you sarcastically and you keep going. It's slow and steady, you're not made for speed. This is about completion, not the best time, not any kind of "must be this" goal that has been set. You just want to do it.  It's hard - your feet really, really hurt. You're discouraged by that, you're discouraged by moving to the very end of the line of runners and being so far back you can't see anyone.

The end is approaching, the mile markers tell you so. Water stops have shut down but they've left cups of water behind for the stragglers. Dead bugs float in some of the cups, but you pick them out and drink anyway.  A mile from the stop your friend decides she simply has to have this over and even though you are in pain, she knows your feet are in agony - she leaves you behind. You have stopped at every port-a-john to wait for her and still, she leaves you behind to finish that last leg alone. What the heck? You are mad, you are more than mad, you are livid - and it propels you slowly toward that line. Your family comes and sees you through the last bit. You aren't even in the mood to rejoice, you have been freaking abandoned and you are still angry. You get your medal and all you want to do is rip off those damned shoes and socks and see your pulverized feet.  They are disgusting, they hurt like hell - but the rest of you is okay. You are okay. You are ready to do this again and better everything. Anything that can be bettered, you want to better because that is who you are. You want a do over. You want the right shoes, to listen to the right advice.

But nope, you're never doing it again. You have a blood test at for your doc and he finds out you test positive for lupus. LUPUS? You already have autoimmune issues and so this shouldn't shock you. But wait, the doctor thinks that perhaps it is because your body was so stressed so, so wildly put through the mill with the months of training and the bloody foot exertion. You chill, you workout but you don't do that - and the ANA is negative next time. He tells you - no more marathons for you. No more.

But he didn't know that I'd be entering a different marathon. I didn't have the same type of training for this - but I've had set backs and shockers and tragedies that came in sprints and midlength endurance runs. It was all building me toward this, I suppose. I didn't want to run this race but here I am.
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