Be Still My Heart

So, went to work to sign FMLA papers today.  I told Handy Man to go to see his friends.  He said you weren't supposed be in the work area when you weren't working. I replied, umm, well let's just say I replied something that ended with,"Just go." He did and everyone was glad to see him. 

He took his uniforms back in and learned all about what his forty-one years of never being late and not missing a day for thirty-nine years, plus thousands of hours of overtime and weekends gets him.
Suffice it to say, it was a sad day.

Then you have to take the papers to the doctor, and then you have to pick them up and take them back.

Finally after four days, countless phone calls, I picked up that prescription an hour before he was supposed to have his next dose. Some magician finally waved their magic wand and we went from four days of pills at 134 dollars, to thirty days for $40. That is some serious magic. I need that wand.

Some folks have commented that  they are afraid to call and disturb him. Let's set some parameters.
8 to 11 in the morning, 3 to 6 in the afternoon are good times to call or visit. That way he can have an afternoon nap.  Nothing set in stone there.

He appreciates the thoughts, cards and visits and please don't stop those prayers.

We still have no appointment for the cardiac MRI. I will start calling tomorrow.

The porch sitting is so lovely.  Hope you have some porch sitting wherever you are .

Technology

For all the technology we have to use, communication still seems hard.  Handy Man and I headed to his primary care office this morning to try to straighten out the need for the pre-authorization for a med.  I also thought, since we were there, I would ask for a copy of his records.  While we were waiting, someone came out to request that we see the nurse practitioner, the person he saw three times in the last six months.  Let's just say I felt worse than if I been dunked in ice water.  I had not intended to address this situation today. Just not really in emotional shape.  I sent out an emergency call for prayer. I figured we'd all come out in better shape if the Holy Spirit went before me. We had to wait there a while.  Then back in the room for a long time. Oh, not before paying for the visit don't you know.  So he comes in and acts just exactly like Handy Man's  getting a check up for a sinus infection, so dunk number two.  I never said one word unless there was clarification needed.  I don't believe I've ever seen anyone go through a few papers so thoroughly in my life.   Finally, after saying he would take care of the med situation, asked if we had any questions.  I said that I had a question. Handy Man had clearly had this heart injury for a long time. How was it overlooked?  At first he bumbled around and said even the hospital report shows how atypical he is, stout, not showing obvious signs. I said, "I'm sorry, a sixty plus man presenting fluctuating blood pressure and excruciating chest pain did not clue you in that at the minimum a stress test and EKG was called for?"  Finally, he said that he was thinking of the event as back pain and completely missed the obvious, he should have explored it further.  By this time, I was teary, not over the top, not yelling or being dramatic I just said the truth. "Now his very life is at risk and I am shattered." " I don't have anymore questions." And we left.

We still don't have the med.

Today showed no weight gain-good.  A perfect blood pressure- good.  Still a good appetite.  Each day I ask how he's doing and each day he says, " I'm not afraid, I think I'm going to be okay."  That will be just fine by me.

Shower time is intimidating, when the bomber vest comes off.  I just stand and wonder how you do heart percussions and call 911 and well all sorts of things.  I was holding the towel in front of the heater, waiting to hurry his vest back on and this cotton boll wreath was right in front of me.  Seems I spend a lot of time trying to get my mind in a better place so I was just thinking about God creating cotton and wondering if He smiled thinking about all the things people would figure out to do with it. Wonder if He pictured it being spun out into thread.  Then did He imagine indigo, so they could be dyed blue, like the sky?  And who else could have thought up all that silk thread in moth cocoons, and the strength of that stuff.

Who thought of this life giving vest? Thank you Lord for that person.  We got the new one today, so I had to change the electronics. Ugh, just praying you do it right.

An alarm woke us up at one a.m. this morning. Thank God, I  immediately knew it wasn't the heart stopping siren, it was an alarm we hadn't heard at training. A lead was off. The flashing light was orange, not red.  I found it pretty quickly.  Gee, whiz. Probably happened because you need to change the vest  every other day so they don't get loose.  We were supposed to get the second one on Friday. It just came today.  

My Indy friend came to spend the afternoon. She brought some yummy lunch and we planted more flowers. My favorite thing to do. Handy Man was glad to be warm enough to rock away part of the day on the front porch.  More friends stopped by through the afternoon -helps the time go faster as we await MRI.  

Prettying Things Up

This morning, we went to visit his Mom. She had not been able to see him yet, and I surely do know how Mamas fret. Sunday is his usual visiting day.  He then went to church with me. He said the ministers had been to see him so often, he guess he needed to go see them. 
That was plenty, so an afternoon of rest for the Handy Man.
Drummer Boy came out to weed eat and mow again already.

This littlest Pixie is turning four.  Our baby!

 Aunt Tish and Jordan came as well to help me  clean out the chicken coop and weed and mulch and pull the  porch out of the grip of winter dog house and leaf debris.

Phil so appreciates them all jumping in, but I know he also is sad, being a bystander.

He was able to grill chicken for our dinner and it felt, for a minute, well just normal to have a kitchen full of hungry kids.  Buttercup helped me make the coconut cream pies that didn't get made from Easter.  

I had to run to school to leave the sub some lesson plans. I didn't realize it was so late.  I got about half way through before dark.  I have no idea what it is, but dark is when this situation is the most frightening.  I'll have to go back and finish in the morning.

I think we're both ready for a big rest!

The Man and His Dog

So, Handy Man heads out for a stroll and SamWise puts on a big  pitiful shiver, so they both turned around and came back in. In their happy place.

This scene just blows my mind. Not one bit different than any other time, except that in quite an odd turn of events for Handy Man, he's taken to packing around that purse, ha.  Well, that's what it looks like.  He looks like the picture of health. Makes one doubt their sanity.

Drummer Boy came this morning to continue some much needed yard work.  I had to run an errand and stopped to grab a few flowers.  The littles helped me plant.  This is right where I pull up my car, so we can see a bright spot each time we pull in.

The Sunday before  last, Buttons came over to celebrate her birthday.  She again wanted Sushi.

 She always wants a bouquet of flowers and I have such fun picking them with her.

She fed the bunnies, we made and ate a lot of jello jigglers and then did Easter crafts.  This seems like a long time ago.

I ran out to Drummer Boy's and Gwen's, where everyone pitched in for a yummy Easter dinner last Sunday.  The very first Easter in forever with no coconut cream tarts.  Ceece was on her way out, so only time for a hug, and one pic, with her eyes closed- sorry.

 Squinting in the sun. It was such a pretty day and felt so good to have the sun on my face.

 I don't know what in the wide world was said here, but it must have been funny.
Anytime I left the hospital, I would last about twenty minutes before I just felt too panicked to stay away.  I left Bean my camera and I am just seeing these pictures today.

 You'll note the gang is all here, minus the Cpt. He has the most amazing way of being somewhere military every time there is some sort of crisis. He's been out of town for five weeks, but got back today. 

This kid and her crowns and unicorns. Cracks me up.

Easter. May I hold the hope it brings in my heart every day!

Adjusting

The Bionic Handy Man seems to be quite happy back in his familiar spot.  He slept and slept.

SamWise wasn't so happy about that. Sam finally gave up around seven and went on out. "Maybe tomorrow," he said.

It is kind of like when you bring your first baby home. Figuring out the best place for the big battery charger, the information transmitter, the new meds, the timing of everything- anxious to not miss the obvious. He's putzing about as he can. While it is important that he is up and moving often, it is equally as important to not overdo.  So, we're learning to find the balance.
Particularly, he's thrilled to have food he loves.

He was happy to see a familiar and loved buddy from work yesterday.

In such times, we get a lot of requests of, "What can we do?"  This is going to be a long road.  It will be at least ten days before we even know if he is a candidate for surgical repair.  Then when?  Then it is a complicated surgery and a long recovery.  The greatest gift is just checking in, sending a card, paying a little visit. Waiting days are long ones.  He can go to the movies, fishing, out to eat, whatever. 

If you know me at all, I  pretty much call a spade a spade.  That is usually because, well, it is a spade and running from it, ignoring it, or trying to make it  a heart or diamond just doesn't work out in the long haul.  So, let me just say, the Handy Man did not get "reaching out" DNA.  That being said, it doesn't mean he doesn't enjoy relationships, he just isn't good at cultivating them.  He is happy to be a part if someone is willing to initiate the process.  Just saying.

I try to say it in the moment, but it bears repeating- Thank you for every prayer, gift, text, e-mail, phone-call, treat, magazine, mowed lawn, fed dog/chicken/bunny, good food, class taught, test given and errand ran.  Thanks especially for just sitting close-by when there just isn't anymore to say, but it is less scary when I feel your shoulder pressed against mine.  Thank you for medical advice and direction-that is such a comfort to me.
 It would be very easy to go down the "why us" rabbit hole.  I want to go down that hole a different way. Why us?  Why did we get to find each other and start a life.  Why did we get to have three perfect babies and work at jobs we love?  Why did we get to ever have a roof over our heads and food to eat and medical care when we needed it?  Why did we get to have all these gramerlings that have been our delight?  Why did we get the pleasure of an ol' ramshackle farmhouse with a creek and means provided by the Handy Man to welcome so many people big and small to come and be hugged tight by Phil and fed by me?  Why did someone pay the price for us to go on into eternity in peace and love?   
I don't seem to have the ability to live in denial, but we are here in the this scary place and as often as I can, I want to feel grateful more than I feel anything else.  Even if I fall short, that is going to be my goal.  Peace and love to all today!

So, the Insurance Circus Begins

We finally signed our walking papers about 11, but as they were wheeling Handy Man out the door, he was stopped with the news that Dr. Big Cat Daddy couldn't live without seeing him one last time. So we sat, till 2.  Earlier we'd been handed a co-pay card for a med. Not really knowing what that was about, I did as instructed and spent twenty minutes activating the card.  As soon as we were released, I drove directly to the pharmacy as that med should have been taken at three this afternoon.  Then the phone call from the pharmacy saying it wouldn't accept the card and it was denied by our primary insurance, to call the doctor.  Umm, which doctor?  Of course, she didn't know. So I called the number on the only little card I was given, but that is not the right doc, so I called the one they told me.  So here we are, doing what it appears we do best- waiting.
So, Handy Man came home with a life vest and the purpose of letting his kidney's rest, him rest, keep his blood pressure down and his heart rate.  He has me to dodge these bullets for him, make phone calls, deal with the absolute ridiculousness of our current state of insurance, but what about the people who don't, the frail and elderly, the single parents. It is shameful.  I barely got all of his electronics for the Life Vest out of the box and in their new home when the pharmacy called.  I surely hope someone finds the answers before the doctor's offices close.

Of course, them sending him home on a Friday afternoon to a SNAFU with the insurance, makes me wonder what is going to happen when they try and get and okay on the cardiac MRI.

Ugh.


Handy Man and Sam were sure glad to see each other. 
The wait and the ride home wore Handy Man out.

Life in a Vest

Though outside our window it was gray and rainy all day, we experienced some sunshine in our room.  Handy Man's kidney function remained normal.  The surgeon stopped by to say the blockage in the carotid  artery was less than expected, meaning no action on that at this time.
Next came the life vest that will start his heart if it should be in failure.  Lots of explaining and trying out different things.  Handy Man says he looks like a suicide bomber.  Boy, things get very real when you start strapping on a heart shocker.

Just the cardiologist left to give the okay to be homeward bound tomorrow.

Last was Dr. Big Cat Daddy.  I've learned to brace myself before he walks through the door.  What an interesting character.  So, he walks in, and wants to examine the life vest front and back and also comments on it looking like a bomber vest. I know not to relax. I'm getting wise.
He states- "I had a patient who didn't think she needed to wear hers.   She's dead, 36 years old."
 Have mercy, poor lady.
I wanted to say that we are completely grasping of the gift of this vest. "Yes, we get it!" There is no further need to get our attention.
But I accidentally wrangled the tiniest bit of good news from this encounter. I said I wanted a CD of the heart cath. My kids want to see that giant branch artery.  He said, "How would you know what your looking for?"  I replied, "Well, you showed it all to me."  The happy slip, " The surgeon thinks that branch artery is what's going to save his life, " and went on to explain.  So, the surgeon does have hope for a successful surgery.  Drummer Boy says we'll call it his Jesus Branch.  This is the place we're in, happy over the idea that they will take out a section of his heart.  Mercy, takes my breath.

Then my sweet pastor stopped by.  She said she was praying the prayers for the doctors and everyone involved and just felt the Lord wanted her to pray for straight up healing that He could do.  Yes and Amen, I surely agree to that.

I know people don't, but I believe all good and perfect gifts from come from above, however the Lord wants to heal him is good by me.

So perhaps we will get home tomorrow.  Handy Man is ready to climb back into his own bed and eat my food.
He took several walks today and continues to look very not sick.

As always, appreciative of visits, treats, lunches and prayers.

Where We Are, Where We May Be Going

I understand a little better about the bypass situation. I don't like what I understand better. It makes me cry to write it.  Please understand these are laymen terms. 
It would do no good to put a new artery that flows blood to a place in the heart that is now unable to receive said blood, due to extensive damage. 
That is where we are at. 
The only bypass possibility involves resectioning the heart. In other words, what no longer functions is removed, working heart muscle is then put together, and new arteries are grafted in to supply it with blood.
In order to consider such a thing, a cardiac MRI must be done and the decision made.  They believe they have stabilized our Handy Man enough to send him home to rest with a life vest.  He can take a few days to allow his kidneys to recover from the dye tests, get some much needed rest, get the MRI and then find out what can be done.
Still out is the outcome of the angiogram on his carotid artery. That will let us know if we come home tomorrow or when.
We've moved to the PCU so he can be up and around as he is able.
Our world has been turned upside down.
So thankful for all the people reaching out to us.  We appreciate every prayer, and hug and lunch and goodie bag and errand run.

Shock Waves

Wonder if they've ever done any scientific studies on how many shocks you can take without frying your brain.
Shock that Handy Man had deep vein thrombosis
Shock that he was in renal failure
Shock that he was also in heart failure
Shock at how tricky it is to save one and not damage the other
Shock that he didn't get a stint to fix it
Shock that the damage was so very bad
Shock that his carotid arteries are also blocked
And the biggest shock of all, the surgeon doesn't know if a bypass surgery will fix it.
They are sending him home, wow.
In a week or ten days he'll have a cardiac MRI to determine his viability for heart repair.
I just have no words.

On the Road Again, the ICU Road

I started this blog back in the day when I couldn't keep up with keeping everyone informed when Kaye was so ill.  I've continued, more as my personal journal, as blogging is now old school. 
Well, I'm back to another serious illness and my fingers and battery cannot keep up on my phone.   It is lovely to have so many praying and concerned. I don't want to not let people who want to know and to have whatever new information is coming in.
Handy Man and I went to the ER Thursday evening due to shortness of breath and swelling in his lower extremities.  We weren't there long before they were pulling off fluid and he was feeling better. From that night, until today, one awful thing after another has been revealed with each new test.  It is like playing a way wrong lottery and every ticket has your name on it.  First it was blood clots in the legs, then it was renal failure, then it was that his heart pump (ejection fraction) is only 20 percent, then it was 100 percent blockages and lastly, today, blockages in the arteries in his neck. He is in critical need of by-pass surgery, but it can't be done until the dye is out of his system after dye requiring procedures.
I've always been a big picture person, but I am full up to my ears of bad news. We are shocked and instead of moving forward it feels like there is just another slap around every corner.
I appreciate my kids and sister and friends who circle the wagons. I appreciate every prayer.  I have no words for the level of appreciation of people in the medical field we're blessed to know and love, who blaze the trail in this dark and smokey maze for Handy Man and I.  We have a long road still, and I know that the prayers will be what it takes to get us to a healthier Handy Man.  Please continue to lift him up to the Lord.

Today, when the cath doc led me through the closed off arteries in his heart, it  is just impossible that only three weeks ago we were climbing up the side of mountain to stand in the Cumberland Gap.

What is even harder to understand is his color is great, his appetite is great. He doesn't have trouble getting up and around, nothing hurts. It is just crazy that all this could be real.

Well, time to head back to our current digs in ICU.