Posts from hell week Part III

7 July at 06:42 · 

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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

7 July at 07:42 · 

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...

7 July at 13:33 · 

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.

7 July at 14:48 · 

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

7 July at 22:36 · 

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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"

8 July at 06:41 · 

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."

Posts from hell week Part II

5 July at 09:34 · 

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.

5 July at 14:17 · 

Things seem brighter when you have finally had a shower.

5 July at 17:54 · 

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 · 

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  Lost Dogs No Ship Coming In· 

One of our songs....
It's all breaking down
Crushed into the ground
But we're gonna see it through together

5 July at 23:42 · 

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.

6 July at 02:52 · 

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

6 July at 16:00 · 

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

Posts from the week of hell Part I

4 July at 05:02 · 

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.

4 July at 14:58 · 

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.

4 July at 20:01 · 

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

5 July at 02:52 · 

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 

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.

A Facebook post of random happenings during this crazy week

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.

In a single evening, my life changed

In  single evening, even in a single moment. That is all it took to forever readjust my life and my priorities. I'm not even sure at this point how far the adjustment knob of my life has been turned.

My husband, Pat, and I had a normal weekend. We both felt a bit cruddy and didn't do our planned anniversary hike in the Pennsylvania mountains. Instead, we laid low - we walked the trails at  couple of bogs and checked the state of the blueberry ripening. We watched a documentary on Edward Bruce, Robert the Bruce's brother, and his attempt to deliver Ireland from the English. We slept in a bit late on Sunday but made it to church on time. Had  relaxing lunch and then went furniture shopping. We didn't see anything we liked but wanted to go home rather than continue shopping around. He napped a little then began his yard work that he loves to do. I made a  gluten free black raspberry cobbler and he grilled some ribs.

After our late dinner, he went outside with the dogs to check the pool and make sure all was secure for the night. He was tired, a bit irritable and we were going to go to bed by 9pm.  He came inside belching, complaining that after eating two Altoids he had developed heartburn. He was getting agitated and in obvious pain. He took Tums. By almost 10pm the emergency room had been spoken but he had me go to the store to buy Tagamet. He took it and we waited for something to happen. He was pacing. Putting his arms up over head and stretching on our pull-up bar. Sweating, frustrated. I kept asking where the pain was - and it was at the top of the stomach he said. I asked about his arm and he said no. He had me look up GERD and see what the dietary restrictions were and to find out what they would do if you went to the emergency room. When I read the lifestyle changes, when I said "No smoking" he got extremely angry at me and excused me of giving him a lecture. I kept asking him to go to the ER and he kept not wanting to. By midnight, I was exhausted and laid on a yoga mat on the living room floor. He was irritable and in pain, nothing helped. He tried a teaspoon of baking soda in warm water. Horrible tasting a no help. Finally, he agreed to go to the ER. I was exhausted, we argued while we were getting ready. He was unreasonable and that made me really angry. We bickered and he ended up driving his car while I drove mine. It was crazy and so abnormal.

We arrived at the ER and while the triage nurse talked assessed him, I did the financial stuff. They made him sit in a wheelchair. He was still agitated and very irritable. He was wheeled to a room ad rudely complaining about how long it was taking. It was actually very speedy, but time must have been going at  a different pace for him. Once in the room, he was saying nasty things about the speed and a nurse came in to hook up an EKG. What she saw led her to rus to the doctor after 30 seconds, the doctor came in and told him that he was having a heart attack and they were sending him to Ahuja by helicopter. When they walked out, Pat got nasty saying that "This is Robinson, they don't know what they are doing, I'm not having  heart attack." I had started to cry. I told hi he could always get a second opinion at the other hospital. The doctor and nurses came in giving him nitroglycerin, preparing him for the lifeflight. I kept telling him I loved him and he looked me in the eye and told me, "REMEMBER, I love you more" The lifeflight nurses gave him fentanyl and something else, we said I love you once more and he was wrapped up like a burrito and taken away.

My daughters all had their phones off but one. (I could only imagine how terrifying it would be to awake to those messages). Rhianna got out of bed, got dressed and prepared for me to pick her up. I ran to the house to pick up some important things and got her. We then drove the 25 miles to the next hospital where we were directed to cardiac ICU's waiting room. The team had been waiting for him and he was taken directly in.

It was a nerve-wracking wait - daughters had been waking up and calling, terrified to hear the news. We had even more terror when Rhianna and I suddenly heard, "CODE BLUE Cardiac ICU, CODE BLUE," We knew it was him. We prayed like never before.  What an amazing wonder it was when the doctor finally came out and told us, that yes, it was him, but he had made it. They had resuscitated him and he was recovering and being put in a room.  He had had a completely blocked artery, had heart catheterization surgery and a stent put in; as he surgery was ending, he had had a massive heart attack and pulmonary failure.

By 6pm, another daughter and her husband arrived, along with our pastor. When we could go back he prayed and we all hung around his bedside. After a time, the doctor said I should go home and sleep so Erin & her husband elected to stay. No sooner than Rhianna and I had gotten home and gotten prepared to rest, Erin contacted me to say he was going to be flown to Cleveland to the best cardiac unit in the state. No sleep - I then got my other daughter, Jenna, who drove while we rushed the 40 mile drive to Cleveland. Poor Jenna had been juggling what to do with three kids at home and praise God her husband was off for the Fourth. In spite of being 37 weeks pregnant and going through so many trials in the past weeks, she got us safely to the hospital.

Once in the heart unit, he had another procedure where a device called an Impella was inserting in his heart to assist the left ventricle and give the heart rest. A dance of adjustments between the respirator, the blood gas levels, machines and procedures I'm too tired to understand or describe. Not enough. After a night with a "suction event" and a mix of forward and backwards steps, he went for a new surgery to attach him to ECMO, extracorporeal membrane oxygenation, the highest form of life support. A mad dash had to take place between the third and second floors, a dance of adjustments and a team of several people for the dangerous journey to the cardiac surgical ICU.

The amazing team of doctors did the job and here it is, I've lost count of when and all. I just know it is Friday. He's on dialysis. His heart is doing better, his vitals have been well controlled by machines and all the blood pressure controlling meds have been discontinued. He is allowed to come out of sedation briefly to be asked to wiggle his toes, blink his eyes, etc. He does well. I had been happy when he squeezed my hand a couple of days go when I asked. Today was better - he turned his head when I spoke to him and tried to say something to me (impossible with the tube down his throat and his very swollen tongue).

So here we are, Friday - and this ordeal started Sunday night. He is going to go back in surgery for a step forward, the ECMO is being switched out to lungs only support. The Impella is down to a super low setting. Things are healing. The nephrologist came and explained the kidney situation and that what has gone on with his kidneys is common to this traumatic injury of the heart and gave me a timeline.

The love and support of friends and family has been overwhelming. It is beyond incredible to know how many hundreds of people are praying for him. To God be all the glory! We have felt His presence and His hand throughout this whole ordeal. Not a moment has gone by when we didn't know that He is in control. Whether Pat lives or dies, we know that God love us and that He is able to lead us and guide us through whatever the future holds.

Family has been amazing - both immediate and extended. The girls have just been fabulous and been able to help and support each other. Mother-in-laws, father=in-laws, great grandparents, have helped out with children so the girls could be with their dad. Friends have dropped everything to be by our side. It is just so humbling and gratifying.