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.

Major Setback!

I have been very busy with Fred, lots of activity back home, and problems at our new apartment, to boot, so stress level is high and sleep is low!  But, I know you all want to know how Fred is doing, so I am going to quickly bring you up to speed.  I will post updates after the mid-level team comes by this morning.  As far as timing of further updates, I know for sure we can speak to “A”-Team with Fred’s surgeon later today, but they don’t start rounds until 1:30pm and he is #76 so that will be more like 2:30pm.

.

Our Rock Star has been doing everything he is supposed to do. He has been walking, exercising, eating, but his new liver seems to be high maintenance and is not happy.  His liver function labs have been declining and last night and this morning he took a real hit.  His belly is distended, his energy and appetite are gone and he is back to the walker, he has had moments of delirium, his blood pressure was high yesterday, but today very low, and hemoglobin was so low, he needed two units transfused yesterday.  His platelets are at 13 and they have him scheduled for 2 units of platelets immediately.  The transplant team would like to do a biopsy but needs to re-check platelets after the transfusion.  They also have 2 units of red blood cells and 4 units of plasma on hold (in case needed during biopsy?).  There was an order for NPO (no food/water) after midnight, but we don’t know why (precautionary?).  While I was typing this, he had a seizure (or seizure-like) episode for about 30 seconds! Gave me a heart attack.   In seconds I had a response and in minutes the room was FILLED with doctors and nurses.  The new plan (after this episode) is to add some fluids to his orders and some albumin.

No pictures of him today as it isn’t pretty.

I can tell you that Saturday he took a monster walk … all over the hospital … and wanted to go to St. Luke’s Chapel here at the first floor.  He was feeling really good and very grateful.  I leave you with this really good moment at St. Luke's and will update with "comments" under this blog post as the day goes on.

Extra praying today.





Day 4 - Rock Star Alert!

Let me just say quickly that Fred’s bilirubin dropped from 8.6 to 3.2 and his creatinine is now at 1.5 (both not quite normal, but trending in the right direction); his face and eyes no longer look like he was in a tanning bed; and while he did need insulin at breakfast and lunch, his glucose came down and NO INSULIN at dinner or bedtime!

Here's the part where I show this to you, I drop the mic and I walk away….

BAM!

Oma-hahaha…..that wasn’t funny!

So, this happened early evening today.

Rope tornado touches down outside Omaha.

Fred went for his 5^th walk around the hospital floor.  Yep you heard me right.  5!  – count ‘em 5! And when I say around the hospital floor, I mean as in a lap! And right when we got back to the room, a nurse calmly said not to sit down – that we needed to take chairs and sit in the hallway.  Something about a tornado.  (I inserted the word “drill” at the end of her sentence and obliged.)  I thought it weird that she closed the blinds and door and then asked Fred if he had tennis shoes.  Maybe they are thorough and super serious about their drills!

Then they started moving beds in the hall and deciding which hall was the hall we could and could not use. And talking about getting so-and-so who was in the shower.  Better get him!  Then the energy went up a couple notches and the nurses and staff all started buzzing about it not just being a tornado warning because a cloud was spotted.  A tornado had been spotted and it had touched down nearby!  "We need to start banding the patients according to who needs the most help."  (Then they placed colored wrist bands on patients: red/green/yellow.)

Whaaa?  Here we are in the center of the building, windows blocked, everyone evacuated out of their room, no idea what is happening outside.  No TV.  Nothing.  Well over-emotional geek that I am, I started texting “I love you” all over the place.  So, if you got a text, well, I love you!  And if you didn’t, well, I still love you!

The news reports it was reported as a Council Bluffs tornado -- actually a water spout that touched down at nearby Lake Manawa: click for video

On to Fred!  He is out of ICU and in the Solid Organ Transplant Unit – Room 5876.  His kidneys have improved, but his liver took a slight hit.  His bilirubin is up and his skin and eyes are a bit yellow.  The team does not seem to be worried about this as they did an ultrasound and there was good blood flow to the new liver.  They think it is related to the two blood transfusions he received and will check his numbers tomorrow, expecting improvement.  Also, his adrenals are whacky and he needed insulin at lunch and at dinner today.  Apparently, this is not uncommon post transplant and is due to the high doses of steroids to keep the body from rejecting the new liver.  The team doesn’t want him to have low blood sugar and would rather treat him with insulin if it gets too high.  I am a little irritated because they insist he drink Ensure Clear and shortly after they check his sugar and it is high.  The first 3 ingredients are water, sugar, corn syrup solids for a whopping 27g sugar in one serving.  I discussed my concerns with the surgeon and she emphasized that the priority right now is getting calories, protein, vitamins in Fred to heal.  He will need to be on the clear diet for another day and this is how they can “fortify” him while his bowels slowly wake up.  He will be drinking as much of it as they say he needs to. 

All in all, he is getting stronger every day and the team, nurses, and techs all seem to think he is the rock star we KNOW he is.

Tonight I pack our bags and get ready for the move tomorrow -- to our new apartment!

 

Watched Closely

Fred is still in SICU and the “A” Team is still watching him closely.  His kidneys took a hit, which we were warned could happen.  His creatinine levels keep going up, so the team keeps changing things up, trying to avoid dialysis … but at this point, not completely ruling it out.   They had him on fluids, then stopped the IV and have added diuretics to increase urine production.  That seems to be working but I don’t know, yet,  if it has helped his numbers.  He also has a really low platelet count and is currently receiving a platelet transfusion AND his glucose has been rising.  He  is teetering on the threshold of needing insulin.  (He is at 150 and they have orders to give him insulin at 151.)  Hang in there, baby!

The back is still a problem.  I have tried massaging and supporting him in a side-lying position with pillows.  Every new position provides relief for precisely 10 minutes.  They have also added a muscle relaxant to Fred’s cocktail and he has at least managed to snooze a half hour here and there. 

It is a challenge, but he is doing GREAT with his breathing exercises and has already taken three walks -- each longer than the other -- and both  3x (or more) as far as he went yesterday.  In the midst of the pain and challenges, he still manages to crack everyone up. 

I took this quick video while he was on his third power walk and doing just that -- making people laugh.  I had to shut it down before he caught on.

His NG tube has been removed and he has happily downed water (instead of ice chips) and two “delicious” banana popsicles.  And you know he has been on a low sodium diet too long when he can just take a look at the chicken broth and say “I can’t have that!  It is going to have too much sodium for me!” 

They transplant team has cleared him to leave the SICU and move to the solid organ transplant war as soon as a bed is available.  I am not sure when exactly that is supposed to be, but I know it is progress!

Go Fred!

In between hanging with Fred, I have been working the apartment thing.  We had put in an application on Sunday, but I got a call while Fred was in surgery that the Month-to-Month they quoted was inaccurate because the furniture rental charged a HUGE premium.  Like $1200 more a month than we wanted to spend.  We were being asked to lock into a 3-month lease to pay less, but that was now also quoting higher than when we submitted the app, and we are hoping to only make this a 2-month gig.  I made some calls yesterday and discovered we needed to be further away and in an area with less places to walk around during recovery to get it down lower.  I set up a 1:00 meeting with the agent to try and reduce the furniture (get less for same price).  I was looking at cancelling this meeting if I wanted to talk to the team when they made 1:00pm rounds, but instead, I heard from a gal that our 45 Madison leasing manager had referred me to. (Thank you, Amy!)  She emailed me about an upcoming opening for a reasonable price in an area we want and it is all inclusive.  We don’t have to set up any cable, electric, etc.

Now the crunch is to get the apartment ready by Friday, when my hotel reservation is up.  I have been forced to become the Queen of Plan “B." 

“You go, Girl!” …

That was the text reply from one of Fred’s good friends, Paul, when Fred let him know he had received THE call and was in pre-op waiting to be brought in to surgery and meet his new liver.

Well, Fred heeded Paul’s advice. And like Susan mentioned, he “kicked ass” during the 10-hour surgery.  He is currently having issues with his back. [I remember it as a congenital spine disorder that they found 17 years ago.  He says it is degenerative back disease.  Either way, it is very real and is aggravated by laying on his back (which he is looking at doing for quite a while).]  The goal is pain management and he had a really tough go of it last night.  He also had some problems with what I can only describe as a  mucous plug in his throat while he was intubated.  At some point they deflated the gasket a bit and that is when he got the mucous.  It was really hairy because he was in pain and extremely agitated with his hands restrained.  He was trying to communicate by writing but couldn’t.  We finally discerned he was spelling claustrophobic (can’t there be a SHORTER word for this?) and needed the tube out right away.  They got him off the ventilator at about 1am today and out came the plug that was making him feel suffocated.  He will need to keep the NG tube (which goes to the stomach through his nose) in through tomorrow.  He gets the central line removed from his neck today and they will put a pick line in his arm instead.  They are also working hard on the pain management.  I cannot say enough good things about the liver transplant doctors and surgeon, the ICU nurses, the respiratory therapist and the physical therapist.  EVERYONE has been stellar. But, especially, this guy!



Only about 13 hours out of surgery and after his walk, Fred repositions to a chair -- in an attempt to alleviate the back pain.

Meanwhile, Fred is working hard on being a rock star.  He let the team know he wanted to try and stand or walk, so PT came in for an assessment and got him up on a walker.  He only managed about 10 feet in each direction before his legs started really shaking and he was out of breath, but this was phenomenal.  I mean that was not even a day after getting out of surgery, folks!

Fred has not had a chance to absorb the love and support or even to read all the comments on the blog yet, but he had tears in his eyes when he thanked the liver team today in rounds.  I did share this little video sent to me from Amy and Kimberly from our 45 Madison home in KCMO.  

Amy tapes Kimberly's response to the news.

 I video taped his response, too.  You can see he is trying to absorb what he has seen and even hitting play again.  I am posting it for the giant smile I demanded at the end of the video.  I wanted to be sure to share that with all of you.

Handsome Fred watches the video on his phone.

I want to thank everyone for their prayers and the outpouring of love and support.   We have a long road ahead of us, but this first hurdle was huge and we leap with great gratitude!

We also need to thank God, Fred’s liver donor, and the donor family.  After the first liver transplant, the donor and donor family from Liver 1 have been in my thoughts and prayers EVERY DAY.  I now say prayers for an additional donor and family.

This absolutely would not have happened if it were not for two things: 1) someone else lost their life and their family suffers a horrible tragedy; and 2) someone else chose to donate life (either the donor or their family chose to donate organs).  By registering to become an organ donor, one person can save the lives of up to eight people. 


I have left Fred in the capable hands of the Nebraska Med SICU with this view (if he tries real hard).

I am back at the hotel working options -- places for us to live.  So many unknowns and so little availability.  We shall see what I come up with.  There is also a shower and pillow  on my schedule.

I will try and post a little something on Fred's progress tomorrow -- either as a comment or new post.

We got "THE" call!!

I posted a new blog last night to update everyone that we had been called to Nebraska suddenly with the good news of a successful petition for a high MELD at that transplant center.  Yay!  Well it seems I like I just wrapped that up, because soon after hitting "post" we found a Whole Foods close by to grab a light meal and then crashed early and hard.


At midnight, we were awakened by a phone call from the transplant coordinator on-call.  She let us know that the surgeon had just accepted a standard liver for Fred (not extended criteria). She wanted to hear from Fred verbally that he accepted the offer. (He did.)  And he was told to have no food or drink from that point on --  and to head to the hospital to be admitted while they wait for the surgeons to visually assess the donor liver.  They have an OR room tentatively scheduled to do that at 7am our time.  If it looks good and things run on time, the next step is to transplant Fred at around 10am!

The patient is cool as a cucumber and ready for the green light.  I will post surgery updates as "comments" under this same blog post.  Stand by...