Home Sweet Home!

Just a quick update to let you all know we are home and finally settling in!

It has been a month to the day since we came home.  Fred up until a short time ago, was still struggling with his appetite and I was struggling with the tasks of food prep, calorie counting, and working him out like a boss at the table.  All while managing the house, the dogs, the pile of bills, appointments, logistics and two jobs.  Fred is finally motivated to eat -- often without coaching -- and the appointments have trickled down.  He is making progress; things finally seem to be getting easier for me; and I am able to post this quick update.  Aaaah.

Miss you Sarah!

So, flashback to one month ago . . .  We booked a flight to Burbank just as soon as we got the green-light to go home.  Fred’s last in-home health care appointment was bitter sweet.  Happy knowing it was the last blood draw in Omaha, we were so sad to say good-bye to Sarah.  She came with treats for us and for our dogs.  Such a sweetheart!  We miss you already!

We packed up and cleaned up and returned the car so a cabby could take us to the airport.  We took one last stroll around Old Market and clicked the last sunset from the roof patio. 

Miss Old Market and the rooftop views from The Corvina!

Miss Jason and Brittany from our Corvina Family!

On the way out we also got to say good-bye to a couple of our friends at the leasing office.  If you are EVER in Omaha, please check out The Corvina.   The building actually has a pretty sweet suite (see what I did there?) they offer nightly rates on, too.  And these guys were great – so friendly and welcoming.  They go out of their way to create a community within the building.  I wish we had been able to socialize more, but it was all business:  heal enough to get the green-light to come home! And it all could not have happened without Kristy Wisdom of Blvd Suites (referred by Amy Middleton from 45 Madison).  Thank you lovelies!  Sadly, we get around.

The flight back was rocky in that it was over an hour late leaving Omaha.  I checked 3x to be sure there would be a wheelchair waiting for us at our gate to get to the connecting flight.  Well, Delta let us down on that one.  We exited the plane in Salt Lake City and there was nobody waiting for us.  We had about 12 minutes to take off on the other side of the terminal.  They offered to call someone, but I saw an empty wheelchair and nabbed it.  I practically ran the whole way and was shocked that there were two inclines from B-D at Salt Lake, but we did it.

My sister Sheri, goofing as a payback for an airport prank years ago.

 

Nephew and niece, Savannah and Jake, surprised us at the airport.  We expected these young adults would be too busy for us old folks!

When we got to Burbank, the airline was waiting with a wheelchair.  Not as critical but Fred was completely gassed and happy not to have to walk.  My sister, brother-in-law, niece and nephew were waiting for us.  Sweet!  We came home to a lovely sign on our door from our favorite 6-year-old, Ava, and a cute sign from our dogs (created no-doubt by Lisa and Savanna).  The place was clean and ready for us to crash (thanks Lisa and Savanna!) and the dogs were happy to have us home.  Fred took the blue room with the hard dog-free bed for his back and I got the master with the ginormous bed and fur babies.  Honestly, for the first few weeks this was necessary and we both got some sleep.

Homecoming greetings from the dogs and sweet 6-year-old Ava!

The first day home was all about settling in and getting provisions.  We also had to jet out to UCLA for labs and we had an appointment to get a PT referral.  The next day was an appointment with Fred’s primary and the PT evaluation.  I am ecstatic that the PT is right across the street from us.  After that first appointment, Fred has been able to go on his own!  I also had to turn in my contract for the parks that first Friday. This left me two days to notify everyone that I would be back teaching … and we were left without internet for a day and a half. 

Busy busy.  I am able to work both jobs but am only teaching a few classes a week … and they are much smaller … but the welcome has been warm, uplifting, and non-judgmental.  Face it folks, I went from teaching at least 9 classes a week to a dead stop at the end of February.  After almost 7 months, needless to say, a few things have changed.  I considered taking a “before” picture and posting it, but it was too sad for words.  Instead, something lighter ... I managed to have some fun with my good friend, Susan.  We saw the hilarious Troubies at the Getty Villa.  Really sad Fred was not up for this, but so so happy to laugh until I cried.

Good times at the Getty Villa with Susan (who almost got escorted out for having a Detroit Red Wings purse!).

While our house was definitely loved and the yard was pristine, after 3 years of a sick husband and 7 months away, it was in desperate need of repair.  We had actually lined up a painter on our first return before he call to Nebraska.  THAT IS HAPPENING RIGHT NOW.  The garage needs to be resided before it gets painted and I nearly fell over when I got the quote, but then I reminded myself it is a 4-car garage and the quote was actually dang good.  We’ve had all the beautiful trees trimmed back before they lose all their leaves and we came home to the pitter patter of critter feet in our attic.  Fred is on heavy doses of immunosuppressants and in no shape to check it out and THIS GIRL is not about to crawl around up there to perform rodent CSI. So we called a guy recommended by our neighbors.  He set a live trap and  blocked off an opening in the front column and it looks like a raccoon found its way to the back column, ripped open the screen and scooted on out.  Still no sign of him in the trap.  Good times!

Back to Fred!  When we were in Nebraska Fred's goal was to watch the Super Bowl Rematch between the Denver Broncos and Carolina Panther's from the couch in our den.  We flew back 9/7/16 and the rematch was on 9/8/16.  That was a sweet moment, watching him chill and enjoy himself for the first time in a long while.   He was also dying to have a haircut and it just so turned out a dear friend and hair stylest-extraordinaire, Sunday, was dying to come on over.  Now he's lookin real good.

Since we have been home, Fred has seen his primary, his hepatologist of 17 years at UCLA, and his UCLA dermatologist -- and so far so good.  No new skin cancers or abnormalities. UCLA and UNMC are on the same page with the anti-rejection meds (controlled by UNMC, but good to know – and the hepatologists at both fabulous centers know each other.  Also good news.)  We were heading out to UCLA 2x/week and UNMC has reduced that to 1x/week. (That is a huge blessing.)  The labs are sent from UCLA to UNMC and no news is good news.  So far they changed his meds once.

He still goes to PT 2x/week, but has a laundry list of stretches, exercises, and balancing drills they want him to do on his own.  He does not have the energy to do them all at once, but he splits it up and bangs them out like the Rock Star he is.  I am waiting for the energy level to come up, but realize he not 44 this time.  He is 61 and went into this surgery a lot sicker, weaker, and older -- and that he had more complications right out the gate.  We are incredibly lucky to be where we are today and happy to be headed in the right direction. 

Thank God.

So good to be home.

But there are some cute and quirky things I am definitely going to miss about Omaha!

 

Making Plans ... to Head Home!

What a difference a week makes!  Last Friday, Fred was beside himself.  Back pain and sleepless nights with seemingly no end in sight had caused him so much anxiety.  I had never seen him like this. The plan was PT and an appointment with a specialist.  But this huge campus is so incredibly busy, they were having problems getting an appointment for him. The transplant coordinators, Mary and Laurie, really understood Fred’s personal sense of urgency and worked extra hard on facilitating alternative solutions. [Thank you!!!!]

We have been driving to a Nebraska Med Center in Bellevue for his PT.  Dr. McCashland changed up some meds and even let us know there was a Plan B, should this not work.  Aaaah!  Big sigh. Carmen’s visit helped turn a corner as well. 

Yesterday, on one of our walks, we made it to the ConAgra Corporate Campus.  I stopped to take a picture of the clock to show Carmen how far Fred had walked.  I think Fred was close to cooked because he would not even stop. BUT, he did not slow down, either.  Here's a shot of how far ahead of me he got!

Today, at clinic we actually discussed the possibility of him continuing the recovery process at home and we have a plan:   We are going to fly home on Wednesday!

Fred will be down to labs 2x a week.  He will have home health care here tomorrow and Tuesday and will line up his Thursday lab draw next week at UCLA.  Nebraska Med will be in close contact, managing his labs and meds from afar.  Last PT in Nebraska – tomorrow.  Next week – Burbank!   The only questions were really about caloric intake and they were going to check with the dietician to see if he needs to increase it .... and if so, by how much?

When they told us the news that we could go home, I was flooded with an overwhelming sense of gratitude that I balled.  We are so blessed that God led us here.  Blessed that Fred was in the care of such a talented and compassionate team.  There were so many people who contributed to this miracle, I was sad that I could not thank every single one of them.  I am glad I thought to nab this shot of Fred and Mary before we left today.  Adorable!

Fred's transplant was August 1st -- exactly one month ago.  Coincidentally, September 1st is cause for celebration at our apartment.  One year ago the new building opened.  It seemed only fitting that we come home to a celebration and cake.

Happy 1-Month Birthday, Fred's New Liver, oh, and Happy Bday Corvina, too!

By no means is this journey over and we know there is a long hard road ahead.  It will just be soo good to walk that road in our community with our family and friends all the closer. 

And man, are we going to miss the high-larity, inspiration, and daily reminders that we are loved, from sweet, sweet Jeanette!

 

Holding Steady!

We are still at the apartment in Omaha, but have managed to stay out of the hospital so far.  Fred has been running a low grade fever for days, but we keep the team updated and they don’t feel it is high enough to run a blood culture yet. So, we will continue to monitor it.  He has home health care come by 3x a week to draw blood, check the wound and run vitals for the hospital.  We are really lucky that Fred's nurse, Sarah, who works for the company that contracts this service happened to have worked 7 years at Nebraska Med transplant program, but on the pediatric side.  She has a lot of knowledge, experience, compassion and great understanding for what Fred is going through.

Fred is still dealing with a lot of water retention, pain and sleep issues.  We are working toward resolution with some modifications to his meds and scheduled PT three times a week.  His physical therapist has recommended some positions to help relieve the pain and has shown me how to massage his back extensors for myofascial release.  This seems to be helping.

Fred and Carmen chilling on the rooftop patio at our Omaha apartment.

More good news:  my childhood friend, Carmen, drove up from Texas Thursday and arrived last night.  She is staying close by through Sunday night.  Carmen brought Fred a bunch of movies, a book on Triumph motorcycles, veggies from her garden, and some Southern comfort food to help with the appetite.  Best of all, she warmed his heart, moved him to tears, got him to smile [a lot!], and has been a huge comfort and help to me!  Love you Carm!
Speaking of love, I almost forgot a huge shout out to Jeanette!  She has sent the most amazing postcards with little bits of love and inspiration ... daily.  We really look forward to popping by the leasing office for our mail and we love you (and Ricko) to pieces.  A big thank you also for the gifties!  You are too  kind.

Hoping to update you all again, soon.

xo

Jail Break!

The last few days have been brutal, but extremely productive.  Fred was dealing with back pain, esophageal problems, WEEKS of sleep deprivation, and some chemical imbalances affecting neurological function.  At the same time, he was (and still is) retaining 10’s of pounds of fluid which make him uncomfortable, affect his blood pressure, his energy level and have given him panic attacks if he lays down too low and the fluid puts pressure on his lungs.  This makes him feel as though he is suffocating.  The doctors were threatening him with a feeding tube if he could not demonstrate adequate caloric intake on his own.  His body said no and his wife said yes.  He was disoriented and discouraged and disgusted because it seemed like all he did was take small bites on a full stomach.  It was like pulling a train to get him  take in 1200-1500 calories Sunday and Monday.  I was really frustrated at the hospital's approach of "calories before nutrition," as they advised him to eat burgers, mashed potatoes, gravy real ice cream, etc. --  so be it if his blood sugar got high and he needed insulin.  But he clearly was not getting enough calories to heal, let alone do the PT and make any kind of progress, so they were spot on with the urgent cries.  Fred does not eat red meat as a rule, so when he ordered two sides of bacon and a chocolate shake for dinner on Monday I lost it.  I ran out to Target and bought a Magic Bullet and some vegan protein and this happened. 

I made a banana and peanut butter smoothie that had over 500 calories

and did not taste like the fake food supplements (Ensure!) they were pushing.

Fred put forth the effort and managed slowly build up the calories and then turned a corner.

Yesterday he took in 2100 calories and today it was 2500.  He is also off all the pain meds and muscle relaxants and on Melatonin to help him sleep.  Calories + Sleep = Energy = Healing. 

Today he got his walking papers and we only had the chance to say good-bye to a few of the MANY people who provided such very good care and put up with him.

I am so sorry for not posting sooner. I have been caught up in this frantic effort and have not had time to blog or work or sleep.  I heard a rumor he might get out today, so I did not spend the night with him last night.  Instead, I ran off to rent a transfer bench for the shower, to fill the refrigerator, do laundry and make sure he had some clothes to fit over the fluid filled middle.

Dude is looking good!  The back is still a bit of a problem as well as the lingering neurological issues.  These will improve as the body works its healing miracles over time.  He has a long road ahead, but is ready and willing.  Tomorrow is an early day with home health care at 8:15am.  Just the start.

Good night!

 

 

Today was better, but we said good-bye to Abby!

Fred's sister, Abby, has been here for the past 3 nights, but she went home to Denver this afternoon. 

It wasn’t easy, but Abby and I coached the big guy into eating 1785 calories in a 24-hour period.  He was practically gagging and I don’t feel good about it at all.  As a matter of fact, I felt like I was torturing a duck -- force feeding it -- readying him to become pate.  Horrifying! That said, Fred does NOT have a feeding tube in today and nobody threatened him with one for tomorrow.  So that's a good day!

Fred’s liver and kidney functions are improving and the team seems very pleased.  His fluid retention issues are a problem for in regard to his discomfort and high BP.  "Santa Fred" (Bad Santa!) is still as big as a house from his ribs to his ankles and huffs a bunch just settling into bed.  But the latest chest x-ray shows no change in the pulmonary effusion (fluid outside his lungs), so he did not need to have the fluid tapped today.  His hemoglobin has risen (it has risen indeed!) -- and without transfusion --  to 7.8.  We are still looking into pain management options -- especially for the back pain.  Maybe once the diuretics kick in and he loses some of the fluid he can start feeling better.

Meanwhile, Fred is on strict orders to listen to The Boss (that’s me, of course!) and work on getting nourished, rested, and stronger.  The prayers continue.  I leave you with the candle Aunt Mary lit for Fred in Holy Trinity Church, Nevada City. 

Fred's candle is the second row from top, fourth lit candle on the right ... the one that shines brightest!

Weather the Storm

If you want to see sunshine again, you have to weather the storm!

Put on your rain gear, Fred, and hold on.

Wednesday evening from the apartment rooftop patio foreboding skies.

Yesterday from the hospital rooftop patio.  Moments later, it was thunder, lightening, and it poured.  Some places had quarter sized hail.

I  published comments under my previous post updating everyone that Wednesday's  " wash out" surgery went well, that the surgeon told me to expect an hr to hr and a half in recovery and they would bring Fred back to his room.  You all know he went into atrial fibrulation  (irregular heartbeat) and landed in ICU.  While the care is extraordinary in ICU (and it DID reunite us with the always - delightful Meghan [I'm totally serious. Not sarcastic here. She is delightful.]), ICU seemed like a giant step in the wrong direction. [Insert petrified emoji here.]



I stayed all night and am told he had a rough go of it.  They brought a super comfy recliner into his room. I hit it hard and zoned till about 5:15 am while his fabulous nurses and techs took great care of our Fred who is also having some cognitive issues.



Fred's hemoglobin dropped again. This time to 6.0 and he needed 2 more units of blood. Liver functions stopped diving but the kidney numbers are getting worse.  They have the nephrology team now involved in Fred's case.



Fred maintained good BP and a regular HR yesterday and was scheduled to transfer to the transplant unit just as soon as they had a bed open up. Moments after that news he really stressed out and over exerted himself trying to negotiate his enormous body to the center of the bed (did I mention the poor guy has put on over 20lbs of fluid?) and his HR sky rocketed and then he went right into afib again! Dammit! Looks like another night in ICU.  


Fred's sister Abby flew out from Denver and we went back to the apartment for some sleep last night. 


Today it is still gloomy outside, but things are picking up in ICU.  Fred has taken a couple of walks.  His hemoglobin is holding.   No afib issues. He is getting some much needed rest and we are told the plan is to move him out of ICU today -- as soon as a bed becomes available.  I think the sun is trying to peek through the clouds.

"Wash Out "– Fred is in the O.R. Again!

The team has decided to do exploratory surgery and take a look inside to see if they can visually determine the cause of Fred's issues and fix them.  They called it a "wash out" and Fred said "Oh, like a #3 at the car wash!" and managed to get a laugh out of the VERY SERIOUS team during rounds.



He is in surgery now.  I will get updates hourly and pass them along.  Praying.