I Don't Think We're in Kansas, anymore Toto!!!

Well here we are, NOW WHAT:  The next week was an amazing time, personally I was just so grateful that we still had a chance.  Luckily, our cardiologist in Boise had prepared us for the possibility of getting an LVAD (left ventricular assist device) before all heck broke lose during surgery there, so we weren't total neophytes with the lingo.  Joe had been fighting cardiomyopathy (enlarged heart) for a lot of years so not a lot surprised us - death however, yeah that would have been shocking - I don't care how prepared you are for possibilities - when the possibilities become realities it is shocking. 

Note to anyone who faces this and has any lead time:  Get together a notebook put anything and everything you have for what has happened up to this point.  Put in a list of medications, Doctors names and numbers, what happened when, when it comes to tests, and anything else you feel might be significant; and then glue it to your thigh.  

When we got here, I just assumed that everyone would be talking to each other - but I had the latest medication list, and they were very grateful that I had it.  They told me that I was the best prepared they'd ever seen and that shocked me.  I gave them my notebook and they took it to copy anything they might need in his file here in Salt Lake.  

They had Joe on IV medications that were helping his heart do the pumping.  It was what was keeping him alive now.  If you don't know my husband personally this is typical Joe:  He just kept telling them he felt fine now and he didn't see why he couldn't leave...It was humorous for the gazillion members of the Heart Team that were in and out of his room regularly (little did they know - he really meant it). 

We had so many staff members coming in and out it was hard to keep track of their names - I finally started taking notes...It was important who was a member of the LVAD Team and who was a member of the transplant team so you  could be on top of what they were referring to.  It can be horribly confusing if you don't know transplant vs artificial heart conversation.  We knew that he was getting the LVAD to save his life, but we were also being worked up for the elusive heart transplant.  

Our son Josh had come down to Salt Lake (from Boise) as soon as he could start driving while we were being life flighted (Josh and wife Sarah had just had a son, their first, one week prior), and son Jeremy had picked up my car (which I had thrown clothes and things into the trunk) and started driving it here so that I would have something to get around in.  Son Bobby and daughters Molly, Kimmy and Elizabeth were in constant contact with us by phone in the week before surgery.

The endless parade of people

 

"The White Light Experience":  Joe's doctors in Boise had basically thrown his ICD (internal defibulator) into him before he left Boise and the normal testing, etc. was not done.  When they got Joe up for a walk he got to the door of his room and zzzzzaaaapppp his defibulator went off.  They got him back to bed asap and Joe told them that "was a shocking" experience (he just kept them laughing).  They got the pertinent people in to set the ICD to a better level, and he told me that all he saw was white - I found that interesting, he found it shocking :)  

Swan-Ganz Catheter

They took him away and inserted a Swan-Ganz catheter in his neck so they could insert the medicine directly to his heart.  The doctors thought that as long as he was doing all right on the IV medication they would hold off on the surgery. - The stronger the better.  He posed for a picture for the boys, which includes an interesting finger.  It will live in infamy, but not on this blog.  It was an entertaining week because Joe's memory was shot due to the slowness of his blood getting where it needed to - what he was told he wouldn't remember in 5 minutes.  He had to be told over and over.  Josh and Jeremy had left Sunday, and Joe's best friend Charlie was beatfeeting to get here for the surgery - so I wouldn't be alone.  Thanks Charles.  Surgery had been set for the 27th of January.

 

The 6 minute walk

The famous 6 minute walk:  The tests kept coming all week.  Joe's favorite was the "6 minute walk".  He was to walk as much as he could for 6 minutes and the MCS (LVAD) team would record his  results.  He is proud that he made it all 6 minutes and told them he could do more.  On his last trip up the hall he started to break out in a jig - our MCS nurse told him "it's not a race", Joe just laughed. To me he said, "See I don't need their surgery". 

The night before surgery:  One of the doctors arrived and Joe told him that he thought their machines were off kilter and that they should believe that he is okay and doesn't need their artificial heart.  This particular doctor is a bit stoic and he told Joe, "I've known my machines longer than I've known you - so I'm going to believe them".  I swear he was smiling as he turned his back and left the room.  Joe's nurse that night was a wonderful young man who had become an endeared character in our lives that week.  He came to get Joe for his shower and "shave".  I couldn't help giggling, because they both decided that they would know each other "much better" after this.  They both came back very sheepish....but I must say my husband's legs looked better than mine, smooth and shiny LOL.  The jokes were flying for awhile, but I know it was Joe's way of getting through the memory of a very uncomfortable situation.  I do thank goodness often that he doesn't remember much of that week - or the one to come, but I think the "shave" is emblazoned in his memory banks forever :) 

He had a very restless night, so many thoughts running through his head.  Mine was no better for the same reason.  We talked little, and held hands lots.  

And now for D-Day:  Around 5 am his nurse (yes folks, that nurse) brought him some medicine to dope him up before they took him to the OR (surgery was scheduled for 7 am).  He had to take off his wedding band at this point - he didn't want to, but they made him.  I took it and promised him I'd give it back as soon as I was allowed.  The medicine worked fast and he soon nodded off.  He would startle awake, smile when he saw me and closed his baby blues again.  Then they came to take him away - I stayed by his side until they got where I couldn't go any further.  I kissed him with tears in my eyes.  He smiled, and as they wheeled him away I yelled at him as I was sinking down the wall to my knees, "Come back to me.  For God's sake come back."  He raised his fist as if in triumph and yelled back "I will, I promise".  And then he was gone, and I started the longest vigil of my life..........my mind would whirl, then go dead, then whirl again.  I heard my mom's voice a lot that day, "Breathe Jenny, just breathe.............I must have been a sight.....and then.............