Tuesday, June 18, 2019

Being Vulnerable

Being Vulnerable, yeah, so I don't like it.  As my mother before me, I have always been a doer.  I usually can come up with six ways from Sunday to show up for someone, but when someone shows up for me,  I feel bad that I've put them in this position.  I feel very embarrassed when my emotions are out of control in front of someone. I especially feel miserable when the showing up is hard and ugly work. Yeah, all that today.
Today was not the best. I left the hospital at 7:30 this morning to run by Aunt Tish's for like the fifth supper the poor girl has provided for me this week, after not getting home till after six herself.
  A text from the neighbor thinking I'm still at the hospital, "Step outside the room and call me." 
Well, my mind went six thousand directions before he answered the phone.  The gully under the garage was washed full of tree debris in this awful rain and badly flooded Handy Man's garage, far into the chicken yard and side yard taking everything in it's path, including my little bunnies.  They found one, half drowned, I don't know if she'll survive it.  That dear neighbor called his firemen friends and they came in the rain and dug out the trees to stop the damage, chased down one pitiful bunny and put here where it was safe and searched for the other. Who does that. Wow, Wow!!!
I called the boys and they came running to assess damage and make a plan.  So  many kind folks have asked what they can do. The boys and a dumpster and a trailer will be here Thursday morning to clean out the garage and salvage what is salvageable.  If any able bodied person is available and would like to help empty the garage, I know they would welcome another set of hands.
If you see a big fire here, it is all the pile of wood.   Thankfully I had another bunny cage. One was destroyed and one wasn't found.   The Captain took my littlest bit home to nurse her back to health.  With all the rain expected I was afraid to have her out.
 I will not be sharing this information with Handy Man just yet. 

This morning Handy Man was doing great and asked for more eggs when I left to let the dog out.  When I got back, he didn't look as good as when I left and soon he was shaking all over, sick and dizzy, so very nauseous.  I called the nurse and she got a med, but it was four hours before he was able to hold his head up.  Then they come in and bring up going home.  Not till you find out what is causing this.
They sort of threaten you that this procedure will do no good if you don't walk and practice deep breathing.  How can you do any of that when you are so very sick.   Ugh.

I'm writing this here, more for my own record than anything.  On Friday a person found me in the waiting room and said she was a case manager and we would start discharge information now. Umm, he's barely off the vent, really?  She asked if I thought he'd have home health or rehab. I told her he was in great shape for the shape he was in and figured home health. Then she gave me a sheet of a dozen or more and said to research them and pick one and drop it off at her office, that day if I could- really?  I had nothing to research on and handed it over to Rae and asked her to do it. She did and had Michael run it back over to me but the office was closed and so I stuck it in my bag and promptly forgot all about it.  So after watching Handy Man be so sick and trying every trick I knew and not being any help at all, another woman walks in. Case Manager number two and the conversation that followed still floors me.
You didn't by any chance get a piece of paper  with a list of home health providers did you?
Yes, I did, it is right here, I picked this one.
Oh, well I feel like I should tell you that the insurance you have won't likely pay for that provider.
Umm, I don't really understand why you would give me a list of providers and tell me to pick one, but not tell me which ones that my insurance wouldn't pay for.
Well, actually, I don't know if that insurance will pay for any of these providers.
What then am I supposed to do?
You will just have to be diligent and do whatever needs to done and call the doctor if  you have a problem.
Vulnerable- yucck. I've held up pretty good this past week, but that was the old proverbial straw and I started sobbing.
Off she went saying she would check, just to be sure.
I cried for two hours.  Thankfully, Handy Man had finally gone to sleep.
Later, I had not heard from Leesh or Ceece about their Mom so I wondered why.  I asked the nurse where the waiting room was for a particular surgery and she directed me.  I found Leesh and it was way pass the time they told her for the surgeon to come out and give a report.  I waited with them awhile.  That is so awful when the clock is ticking fifteen, twenty, thirty ...  Come to find out, the surgeon forgot to come out and see the family and left, taking with him a rather serious report.
What in the world?
Then in comes the case manager and says, " Your insurance will cover the provider you picked out."
Then the cardiologist came in, again astounded at his vitals, but unable to tell me how things would go from here.  Then the surgeon came in a dropped a bomb shell I wasn't expecting.  " He's doing great, but this will take a long time and a couple of other admissions are expected."  Meaning he is expecting more heart failure that will land us back in the hospital, until this remodeled heart can heal.   Well, I guess I'd cried all my tears. I didn't faint either, but I sure felt faint. 
Maybe, Lord willing, he'll be the exception to the rule and there won't be anymore admissions in the near future.
Ceece's Mom has another hard road in front of her it looks like.  My head hurts and I'm just sad.
I have to  finish up here and head back to town before he is calling looking for me. 
But before I go I again want to say, "Thanks so very much," for keeping us fed and watered, for holding us up when we're falling down, for bravery in saving my bunny, for a plan for Handy Man's Garage, for every sandwich and smoothie and other yummy thing, for listening and praying. I am thankful.

Morning Report

The nurse reported this morning that Handy Man stayed in the correct heart sinus rhythm all night long. She said if that continues, he will feel much better. 
Constant thirst is not anything as horrible as that nerve pain (still without pain meds, day two) but it is annoying.  The thirst is due to the medical attempt to pull off any remaining water. So in addition to boiled eggs, today's request was for lemonade and water from home.  The nurse said artificially sweetened mints sometimes helps, so I'll stop and grab that as well.
Thankfully, another day the house didn't float downstream in this rain. I hear it gushing out there.
I haven't asked too much about what all has to happen for him to come home, because they change their minds every five minutes anyway.  While I had already had my fill of ICU's before we ever got there, I do not want to come home with any questionable concerns about the meds he needs, or anything else he needs for that matter. So far, he isn't asking either.
It is so strange for people to swirl around you day and night, changing this and fixing that and if it is like last time, almost until the minute you walk out the door.  That is your focus, and that's about all. You don't really know what day it is. I have no idea what's happening in the world, my world is- what is his blood pressure reading, did he eat, walk, is that a-fib etc.  Then they say, okay time for you to go and they send you home with nothing but medicine, good luck, hope it all works out.  So do I, so do I.
Thank you for your continued prayers for Handy Man and for Ceece's Mom this morning.

Monday, June 17, 2019

Recovery is Hard Sometimes

As I've already said, today started out the best ever and it continued to be the best day so far.
Between walks and restroom, Handy Man got up from the chair without an assist and followed the plan five times. 
He ate the most he's eaten so far. Grant it, about a tenth of what he usually eats, but some good protein today.
I washed his hair and scrubbed him up which made him feel better.
All his visitors were thrilled with how great he looked.
All the docs on board, surgeon, pulmonologist, cardiologist, nephrologist, seem tickled pink.  They want to take a few  more pulmonary measurements before he can get unhooked of everything.  The surgeon said that it will take his smaller heart a while to regulate the water in his system and he needs to find out how to help it out.  In the meanwhile, walk, inhale in the huffalump and walk a little more.
So, today his brother and sister-in-law stopped by and asked me to go to dinner with them.  I do think that is so kind, but my first response was, "No, I better not."  I don't know exactly what I think might happen if I'm not there, but the idea that something might is very anxiety producing for me. They were insistent and then Handy Man got on the bandwagon. They said we wouldn't go far or for long.
 We've reached the place in this recovery that is very, very hard for me.  I know to gain strength and energy, he has to do hard things.  Also that he doesn't want to eat much.  So I'm the one who gets the job of gently harassing reminding him. It seems ridiculous, but it is true, between getting the bed changed, moving all the stuff to get him in the chair or go for a walk, eating,  cleaning up, brushing teeth, taking the meds, calling someone to fix whatever alarm is sounding, listening to a minimum of four docs, physical therapy or occupational therapy, education on what to do at home, etc., it is hard to get all the doctor's orders in.  That boils down to very little uninterrupted sleep, which is what he wants most of all. While I so want to let him sleep, I am desperate to keep pneumonia and blood clots at bay.  I think he very much wanted me to leave him to sleep in peace and not be asked for the tenth time today if he wants something to eat. 
So, I stepped out of my comfort zone, and went.  It was fun and very tasty. Even though I must admit my mind would stray back to our temporary nest, it was a good little break and like so many wonderful kindnesses, I surely appreciate it.
And believe it or not, he was just fine.
I think each time he walks, he's surprised by how hard it is and how far he has to go.  I wish for him to know how completely normal it is to have no energy after such a surgery and to be able to look to better days.  Oh, as of now, 34 hours with no pain meds.  Thank the Lord.
I'm so glad for all the sweet faces who show up and love on us.  Sure makes the days go quicker.
If tomorrow is as good, I'll sneak over to the waiting room to sit a bit with Ceece's family, as her Mama needs a little surgery tomorrow.  Prayers for success.

Who's There

What is behind Door Number 2211 on this Monday morning, June 17th?
Once again, a completely different person than yesterday.  No pain meds for 17 hours.  So, I was right, despite them cleaving his breast bone in two, this was not the problem.  How is it possible that it wouldn't be a problem?  It would not be possible if it were me, but  for the man of a multiplicity of kidney stones and costochronditis,  a walk in the park. That lovely drain pressing on a nerve was the culprit.  We had a restless night. Not because of pain, but sleep apnea, a repeatedly occluded IV line, restroom trips etc. That's okay. When he is talkative, wide awake and hungry,  not gasping for air, even though it is only 4:00 am, I feel refreshed.
Bless his heart, he said, "My leg is hurting this morning."  Really, the one that is black and blue from the entire length of your thigh, that one.  I gently replied, "Honey, that leg has been hurt all week, it just couldn't be  heard over the rib nerve." Next observation, "My legs get shaky when I walk."  Ya think.  Poor guy sure has very high expectations of himself.
This morning the nausea is much improved, he's fiesty, pleasant, no longer sleepy,  and wants to eat, "Boil me an egg." Yes sir, I'll happily get right on that. I'll boil you a dozen.
  Hello again, this man I know. Perhaps we've seen the last time you slip away into pain or sick.  What a happy thought!  Thank the Lord.
So, I'm off to peel some eggs, and hurry back because the Crown Prince kidney doctor sees him for the first time today and I'm so looking forward to just a clear and pleasing conversation.

Sunday, June 16, 2019

Patient Flavor of the Week

It is storming, so if you just get a part of this, and nothing in the morning, not to worry, it is the weather.
It seems every other time I walk in the room, I'm greeted by a different Handy Man.  As far as pain, well he had pain meds at 10:30 a.m., got out the last drain at 11:30 and hasn't had a pain med since.  It is just inconceivable to me that we could go from yesterday's pain nightmare to no meds all day.  Wow.
That is awesome news.
It is also hard to believe this has only lasted five days. What?
What isn't so awesome is along with dizziness that was always present we've added nausea to the mix. So a very quiet, tired, sick patient today. Add this very dark day and his room was kind of a sad place. The big picture- I really don't know how this recovery could be moving the right direction any faster. The minute by minute is ever fraught with some other, or an on-going, misery.
He had hoped to be able to read some, but not yet.
He has no appetite at all.  Also, in a bizarre turn of events, he's gone from always freezing, to always being hot. That could in part be the increase of his circulation, more likely a new med.
This surgery, oh my, everything you do hinges on some other issue you are trying to take care of.  The injured heart puts extra pressure on the kidneys. This means the meds going in are not going out at the rate they should. The only thing that will help is moving.  Do you have any idea how fun moving is when you are dizzy and nauseous?  Poor guy.  Anyway, he's been in a chair most of the day, but has taken a walk twice. Once around the nurse's station and he was well spent of course.
So tomorrow will look like walking, breathing deep, walking, breathing deep.
We both bear a close resemblance to a limp, wet dishcloth.
Aunt Tish and Leesh ( Ceece's Sister Nurse) go back to their other lives tomorrow. Whaaaaaaaaaaaa.
So prayers that Handy Man jumps all the hoops needed for recovery.

The Difference in a Day

My goodness, our day dawned very differently than yesterday, much later too, thank the Lord.
I woke up and looked across the room to bright, open, eyes. I peeked then at the clock and my heart sank- 5:00 am. An hour to go before scheduled meds, the worst hour.  So I cautiously got up greeted him.  What's that- a smile, a big cough without grabbing his chest bars,  a request for food instead of a morphine boost?  Unbelievable.  He slept like a rock all night long.  They had to wake him up to give him his meds at 2:00 a.m.  So, was it the change in pain med, did the anti-inflammatory and ice pack settle that inflammation, all those prayers?  I don't know, but it is hard to even compare yesterday's Handy Man to today's Handy Man.  And thank you Lord, the change is wonderful.

I despaired at him having to endure such pains for days and I despaired of having a ring side seat to such suffering.

As I was leaving he asked for his Kindle.  Hopefully he can say, "Hello, it's me," on fb today.

He will have a challenging day. He needs to be up more than down, he needs to breathe deeper. The chest tube needs to come out, which will, I hope, make that deep breathing easier. He needs to eat.
I'm home this morning making peach parfaits with some protein  and fiber rich foods.  Rae will bring more broth. 

His cardiologist is about to have heart failure himself wanting to do an echocardiogram.  He wouldn't have really considered putting him through much movement till he is stronger and the pain controlled, but is desperate to get a look at that remodeled heart.  I told him he had to show me too!!

As best as I can figure, there is only one big issue related to the heart and that is pulmonary hypertension.  I was told this is just what the body does when you mess with heart, nothing unusual, but takes a few weeks to heal.   We still have afib from time to time, but not so dramatic that it bottoms out his blood pressure.  They are working hard to switch what he does need to oral meds so we can lose the the panel of wires, and tubes and bags,  that looks like a science lab.

Thankful for a Heavenly Father, where I run again and again.

Happy Father's Day.

Saturday, June 15, 2019

The ICU Hourly Special

Good thing I wasn't gone long this morning, as his suffering simply wasn't being controlled. Not getting answers from the night nurse, not feeling helped by the day nurse,  I called Ceece's sister to the frontlines and she got the floor manager.
 By the hour  this morning, a side of me that I work hard to keep wrapped up tight was about to blow.
I said, "You are not listening to me, this is not working, vitals going nuts, him crazy in pain. I want this medicine changed and the plan changed. "  In addition, I asked if they ever planned to move that left leg that had not been moved since Wednesday, and was there any protocol for nutrition, as he had nothing since Tuesday evening.    She kept telling me things I knew and had not one thing to do with the problem at hand.  Soon we were joined by  the surgeon and at last,  things begin to change.  First a new med, second the knowledge that there was inflammation in his chest that couldn't be addressed with the meds he was on, so an additional appropriate relief.
Then, after an hour under proper medication, the goal was to sit on the side of the bed.  Handy Man has never one time been typical in this whole deal and didn't intend for today to be any different.  He sat on the side of the bed, he stood up on that leg while we all gasped and applauded and then took the steps to the chair (occupational therapist guiding and others help hold the five hundred wires and boxes and tubes- oh my). He made it three hours with no morphine boost, ate some healthy bone broth Rae brought and started dropping those drip meds left and right, oxygen turned down. All kinds of astounding things happened just in a few hours when someone finally paid attention and got the right treatment on board.  Thank God.
I did not have the heart to push for more. He desperately needed some sleep.  I never thought gentle snoring would sound like a heavenly choir, but it did. Tomorrow  though, we have work to do with moving those legs and moving those lungs and getting some nutrition into that body.
Thankful for support when you are wondering if you are just crazy to expect better pain control.
Thankful for the docs who are patient and explain details I feel the need to know.
For friends and family who listen to you yell, cry, or do whatever you need to do to get by.
Thankful for special treats, yummy food and holding vigil for me while I write here to you, and wash my hair.
The cardiologist explained some of the nitty gritty of that surgery to visiting friends who are friends with him as well.
Each time I hear it, the absolutely terrifying aspect is still very present, but the marvel is also very present.  It seems like some kind of Robin Cook fiction book, certainly not something that would involve Handy Man.  I don't know why we got the this miracle- oh tears, but I hope we never stop  treasuring  it and appreciate God's handiwork and the gifts He gives.
Specific prayers for today- Some sleep for both of us, that the last drain gets gone and that he has strength to breathe deep enough to keep it out, and no infections. 
One million thanks.