Tuesday, December 31, 2015 5:45am

JUST THE RIGHT TIME CAME

We spent the weekend enjoying our family!  The house was usually full of 7 adults and 9 children under 8 years, so there was always activity and laughter.  Thanks to Stephen's cousin, Jennifer, two families were able to sleep comfortably at a nearby hotel.  We took turns visiting John - the kids  were great for John's spirits and more motivation for his journey.

John is doing very well.  His core strength (think "abs") is slowly growing stronger with therapy. His facial muscles on the right almost provide a "half" smile and his left eye almost closes completely.  He is eating his pureed foods despite their tasteless, season-less mushy nature, thus moving towards removal of the feeding tube.  He is only using the oxygen canula parttime.  With the doctor's permission, Paul and Veronica took John on a walk outside on Sunday - his first time in fresh air since October 21!  Since the kids visited through the day, I spent my first day away from John since this journey began at home with the grandchildren.

Monday just the right time arrived.  John had his therapies all morning, including the tilt table again. A re-evaluation was scheduled for 12:30.  The doctor arrived and the case manager.  There was a lot of discussion of the pros and cons of moving directly to the intensive therapy program at Barrows or moving to a sub-acute facility for some weeks just to gain strength, then on to Barrows.  Much of this decision, unfortunately and characteristically, is based on insurance dictates since we know John cannot reach a level to return home in just 3-4 weeks.  In the end, the doctors and therapists and John's determination won out.  John was moved to Barrows Rehab at 4:00pm accompanied by Elisa and Paul.  The Rehab staff was waiting cheerfully and settled him into a lovely private room with a large window.  We are all so grateful.  John is so happy!

This morning I will leave shortly to participate and observe as John is evaluated and goals are set for his rehabilitation over the next several weeks.  Please pray for strength and stamina for John to meet the challenges each day.

My own path has other bumps because my parents are not in good health.  My father seems to be failing rapidly and they need more help at home.  My brother-in-law, Tom, has been providing most of the care along with his wife, Dee Ann.  While John was moving to Rehab, I was at an introductory meeting, along with all my siblings, to explore the services which Hospice can provide for them at home. I ask that you also keep my family in your prayers during this important shift.

So now I have to run.  A dear friend in Colorado suggested I provide here the family picture which is on our Christmas greeting for those of you who may not have it.  I think it is a good way to end this blog for 2013.  It was taken in Pacific City, OR where we spent a week celebrating John's (then upcoming) 70th birthday.  This is at a site where John spent many hours as a young boy growing up in Oregon.  Our faith and our family and our friends give us confidence and encouragement to move into 2014 with great hope.  Our own prayers are that your year will be one of hope - full of God's blessings and promises, even on your dark days.  Happy New Year!

Christmas Eve 2013 7:00pm

CELEBRATING WITH GRANDPA

Merry Christmas! 
The Hoods and I worshipped at Historic First Presbyterian and really enjoyed the jazz and contemporary music.  Singing "O Holy Night" with everyone holding their candles was a highlight.  Then we all went to see Grandpa -
lots of merriment after we got everyone washed and outfitted in the required garb!  Fun to open presents from Grandpa and explain each little Disney character to him.  We also provided cheerful little voices and lovely children to brighten the hallways for others.

Friday, December 27, 2013 6:15am

IT WAS THE DAY AFTER CHRISTMAS, BUT NO MOVE

Christmas Day was rather quiet for John.  There were no therapy sessions, but cheerful, good care. He doesn't have an appetite, but he tried eating his pureed food.  It does not look appealing - except the yogurts which he is really enjoying and the hot cereal with maple syrup.

I spent the first part of the morning enjoying Christmas gift opening with my grandchildren at the home of my brother, Terry, and his wife.  Along with Cody and Sarah, they certainly provided a wonderful time for all of us.  Then I spent the rest of the day with John.  Elisa, Terry and Julie came to visit.  John tires easily and when he was settled for the night at 7:00pm, I was off for more Christmas celebration with all of my family at my sister's house.

I arrived early at the hospital yesterday, eager and ready for the move to Barrows Rehab and the next phase of John's journey forward.  The various therapists gave him final treatments since the same people are not employed at Barrows.  John has made such an impression on staff with his agreeable nature, great patience and, of course, his personal interest in each one and his humor.  Many stopped by to say goodbye.  The doctors signed off on the transfer papers and we proceeded to wait since we knew the move would come late in the day. 

About 3pm we got the word that John would not be moving until next week. "Someone" decided he was not "strong enough yet" for the rigors of the rehab.  What a disappointment!  We question whether there is another reason - perhaps no bed available, perhaps insurance approval, perhaps hospital politics.  John took it well, perhaps even as a challenge.  I was very unhappy and so glad to have Elisa, Tom and DeeAnn with me to adjust. We know that John is still very, very weak and can do little for himself.  The Guillain-Barre has wreaked havoc on his nerves and muscles, but he has made amazing progress, astounding his doctors.

Rehab holds such promise for the future for John and for imagining that future.  We know John will conquer these next challenges in time.  We ask that you pray for the right time to come and all the pieces of this current setback to fall into place.  Meanwhile, we will enjoy family gathering at our house and visiting John (in turns) from now through New Year's day.  Paul, Veronica and Dillon arrived last night.  Amy and her family are on the road - they made it to Van Horn, TX yesterday and will arrive later today.  God is good.  Thanks for sticking with us.

Tuesday, December 24, 2013 6:15am

CHRISTMAS EVE DAY - REJOICING IN THE PROMISES AHEAD

Wow! I'm sorry that I have not posted for a week!  There really is a lot of catching up to do.  John and I are just moving through our days in a peculiar, set pattern, yet it is often changed and sidetracked. Each day I still spend about 12 hours at the hospital.  John usually gets "up" and into "the chair" as soon as the CNA is available and ready - often just as I arrive.  His discomfort in the chair has greatly diminished since sitting directly upright and moving his head and shoulders.  Then he works through the various workouts with therapists - and naps in between!

Enough - let's get to the real stuff of his improvement -
Wed., 12/18 - John's trach collar was "fully capped" - cutting off the ability to take in air through that tube.  He uses a nasal oxygen canula, but is fully breathing on his own through nose and mouth with  small oxygen assistance through out the day.  At night he returned to using the collar.  He had no problems with this adjustment and felt a bit more free from machines. Physical therapy continued as he sat of the side of the bed mostly unaided, working on balance and strength, and used the tilt table again.

Fri., 12/20 - John slept through the night with the trach fully capped.  No problems.  Oxygen levels and heart rate have continued to remain high throughout all activities.  Blood pressure is always very good.  He continues to gain some nerve activity and strength, but it is very slow - particularly in his right leg.

Sun., 12/22 - Late afternoon, the Respiratory Therapists (under doctor direction) changed John's trach to a smaller one called a "Jackson".  This is a much smaller hole which has a small plug to cap it off and yet has the ability to be used in an emergency and for continuing to suction his lungs and giving respiratory treatments every four hours.  It is almost flush with his neck.  His coughing and throat congestion are improving everyday.

Throughout this past week, John has been having intense Speech/Swallow Therapy sessions everyday (except weekends).  They are using "Vital Stim" which uses small electrodes placed on his face and throat and very small jolts to "wake up" the nerves and create a neurological response which will in turn use the facial and throat muscles.  We see improvement on the right side of John's face, but not much on the left yet - so he still can't smile, raise his eyebrows, or completely shut the left eye. 

The stimulation has increased his ability to swallow, however. Yesterday (Monday) he had a second swallow evaluation (LEES test) and had moved from a level 1 to a 9!  Now he can eat pureed foods!  Stephen, our son-in-law, was with him last night when he had tiny amounts of mashed potatoes, broccoli and V8 juice.

It is Christmas Eve Day and I have to get to the hospital, so here is the really BIG NEWS!  Following all the evaluations and passing an examination by a consulting physician (and receiving insurance approval, of course), John is going to move back to St. Joseph's Hospital (actually called Barrows) Neurological Rehabilitation Unit on Thursday, December 26.  John has been dreaming about this move and the opportunity to really begin work on more serious physical strengthening and moving towards mobility and independence.  We expect this next phase to take many weeks (or months).

Other news: Elisa and her four children arrived on Saturday evening.  Thanks to Brandon, a good friend who helped her drive down from Layton.  Stephen arrived by plane yesterday.  It was quite an event when they all showed up to see John on Saturday - getting everyone properly washed and "robed up" to enter the room was a challenge. but so exciting.  Paul and his family will fly in on 12/26 and Amy and her family are driving from Texas, arriving 12/27.  This is such a blessing and encouragement for John and me, but also for them to see their father/grandfather.  (Don't expect frequent blog postings!)

Now we are ready for Christmas.  Not much baking or decorating has been done.  Gifts are purchased and wrapped, mostly for the children.  The house is reasonably clean and neat.  But it is our hearts that are ready once again to receive the Christ Child and all the promises God wrapped up in that small bundle so long ago.  It is the reminder of the freedom and hope we have for the future because of the sacrifice of Jesus.  It is through visible signs of God's majesty and power and love that we can glimpse the invisible promise in our own futures. 

We are living with grateful hearts that John is still here with our family this Christmas.  He almost went home twice.  We believe that John is patiently listening to God and is continuing to witness to God's unfailing and unconditional love.

Merry Christmas to all of you.  May the new year be overflowing with God's grace and blessings, but also His sustaining strength and presence for what adversity may come your way.

Tuesday, December 17, 2013

CONTINUING TO MOVE FORWARD

John rested well on the weekend and was eager to begin a week of therapy on Monday morning.  He continued on the trach collar with no breathing trouble at all.  The Guillain-Barre paralysis is particularly very evident on the left side of his face and is causing trouble with the left eye.  Some of the discomfort and inability to open it is probably a result of tiring easily.  Along with the throat/mouth/swallowing problems, the right leg also needs a lot of therapy and nerve return.

The significant step forward today: the PT therapists got John upright on the "tilt table"!  That was a bit scary, but exhilarating.  At first they stopped at a 45 degree angle.  When John got his bearings a bit - and was not dizzy and had no trouble with blood pressure dropping - he did 20 slight "squats" on that right leg.  That was hard!  Then they took him up to 60 degrees which put about 2/3 of his weight on that leg.  While upright he also did the regular workout with his arms.  This was John's first time to be upright since Nov. 2 which is very exciting.

The doctors and therapists remind us that this syndrome is very rare (1-2 in 100,000 people) and about 10% of those 1-2 people contract the most severe type.  John is one of those people.  Everyone on the floor who has watched John since he arrived there, is simply amazed at the changes in the past two weeks.  John is pleased with his progress and we listen eagerly to the many plans for the coming days of treatment and returning strength.  God has been very generous in answering our prayers.

Saturday, December 14, 2013 6:30am

JOHN MADE IT OFF THE VENTILATOR!

Early on Friday morning, the RT drew blood gases to check John's oxygen/carbon dioxide levels to see how he was doing on just the trach collar with oxygen assist.  The numbers were perfect and John was officially finished with the ventilator!  We took a picture of the big machine going out the door.

But it was a day of a lot of good news - and busy, swift activity all day for John.  The wound care doctor came in and because the wounds are healing so well, the nurse was able to remove the stitches from the stump.  He also said he would send an orthotist over to fit John with a "stump protector" and a "stump shrinker".  Hmmm....we had heard about this, but were eager to see the real thing.

John was in the chair for three hours.  He is sitting up straight now, with his head up and the ability to turn his head and look around with far less pain.  The speech therapists arrived to do the "swallow study" (FEES) which is a scope w/camera  down through his nose that looks at everything to do with his throat to assess his ability to swallow - thus, to eat food and drink.  We all watched on a monitor while he was fed different textures with blue dye.  John tolerated well, but was exhausted.  They did learn that he needs therapy in several areas including throat, mouth, tongue and jaw before he can eat. The therapist returned in the afternoon and John had an hour of facial workout.  Mild electrical stimulation was placed on his face at several points to "wake up the nerves" and move the muscles. This will be repeated for several days.  At the same time she actually has exercises for his face and throat, including his drooping eyes.  This was all extremely exhausting for John, but no breathing troubles. 


The man from the orthotic/prosthesis company did come in the morning, tried a protector and took measurements.  He returned in the afternoon and John now sports his own stump protector that stops just above the knee to avoid the thigh wound.  It is made of molded plastic and Velcro straps which he wears over a tight, thick, soft cotton stocking.  What a step forward on his journey! (Note the absence of the vent machine in the background.)

The case manager informed us that the physical and occupational therapists feel at the current rate, John may be able to sustain the required 3 hours of therapy per day required to return to the Neurological Rehabilitation Unit (where he was learning to move about with walker when the GBS hit him) in about 2 weeks .  Fantastic news!  Of course, John still has to pass the earlier lists of requirements by the two main doctors before moving: swallowing, eating, using the trach collar more efficiently (perhaps without oxygen), and all bodily functions.  These will more likely take longer, but the goal is within sight in the new year.

Paul arrived late Thursday night - just in time for the incredible day John had yesterday.  It is so great to have him here!  He and John are talking and joking - it is so wonderful!  It is their own brand of humor and communication.  As a result of the facial exercises, John even has a tiny bit of a smile twitch on occasion!  The weekend will be mostly rest, some facial exercises, sitting in the chair, and just enjoying Paul.

On another note, all the papers have been filed for John to be Honorably Retired in the Presbyterian Church (USA) effective January 31, 2014.  Historical First Presbyterian graciously and generously granted him 90 days of salary and paid benefits since his illnesses began.  This is a big step on our new path.  This Sunday I will return to worship, talk to the children at the children's time, and bid a farewell from both of us to this dear congregation.

Wednesday, December 11, 2013 10:30pm

LEAPS OF FAITH AND HEALTH

It is another late night, but I really need to get a note out to everyone.  Monday John was cleared by his primary doctor to proceed with the "protocol" of Select Hospital - the more aggressive steps they follow to wean people off the ventilator.  John had not been stable or strong enough before now.  The pulmonologist and the various therapists took it seriously - John has been working hard in physical, occupational, and speech therapy sessions as well as spending time in "the chair."each day.

Biggest News:  John went off the ventilator and onto his trach collar at 7:00am on Tuesday morning. Twelve hours later John was tired, but determined to keep on the collar through the night.  His doctor was there and along with the respiratory therapist encouraged him to give it a try.  I was very apprehensive, but it was John's call.  As of right now, John has still been only on the collar for a total of 39 hours!!  And he had a full day of therapies - with a long nap in the late afternoon.  When he has successfully been off the ventilator for 72 hours and blood gas tests are good, they will remove the machine from the room.  John is so eager!

Each doctor has a long checklist for John to accomplish before moving back to rehab, but they also have plans for how to do that.  He still has a lot of nerve damage to heal.  We are looking at weeks in this place, but it feels so good.  John is greatly encouraged.  It took a leap of faith on John's part, but it paid off in a big leap forward in John's pathway to returning health.

Thanks for sticking with us in prayer - for sharing the baby steps and the leaps. 

Sunday, December 8, 2013 10:45pm

MY SURPRISE VISIT

This is Elisa making a weekend posting.  I flew in Friday afternoon and surprised my parents at the hospital.  The first thing I saw was Dad waving his arm to say "hello" to me from across the room!

I have been amazed by all the changes - all the progress - that Dad has made since I last saw him in the ICU.  The highlight was having real conversations with him - and his voice sounds just like him. Each day the enunciation was getting just a little bit better.  We looked at pictures, read the newspaper, watched some football and listened to music together.  Dad rested a lot which was the doctors' orders for these days.  He does well on the trach collar, but it is really hard work.  He can become thoroughly exhausted in the blink of an eye.

Dad is still my Dad.  Yesterday's story: Dr. Kenny's colleague (new to us) came in for a routine examination.  After the usual checks, he asked Dad to move his hands and arms, then he asked, "How are your feet and legs?" and threw back the covers.  John's quick answer, "They just don't match." just stopped the doctor cold.

This time was priceless to me.  But what I take home
with me is the realization that he is still very, very sick.
Dad is working hard and waiting for nerve growth. 
It is still a long, long road ahead.

Wednesday, December 4, 2013 10:15pm

JOHN IS TALKING!

John was placed on his trac collar first thing this morning and soon after I arrived, the RT put the speaking cap on it.  John's voice came out loud and clear!  It was so amazing.  He told each of the kids on the phone that he loved them - me, too, several times! 

John's facial muscles still don't fully function and he is having to learn to speak all over again - really work on enunciation using his lips and tongue, but the therapists have plans.  The Speech Therapist also gave him small bites of raspberry sherbet to test the swallowing.  He loved it - the first thing he's swallowed since Nov. 2! Drinking water from a cup or sipping from a straw did not go so well.

John continued with the trac collar for 5 hours this morning and 4 this afternoon/evening - all with the speaking cap.  He just loved saying hello to people and really thanking them for his excellent care.  He also had an incredibly strenuous OT/PT workout again - followed by another PT putting him through exercises with his legs.  All this was while sitting in the chair.  It was an exhilarating and exhausting day.  The returning nerve growth is quite painful, so I hope he can get a good night's sleep because there will be more work to do tomorrow.

Tuesday, December 3, 2013 10:00pm

SEEING MORE OF JOHN EACH DAY

Everyone who walks in the door can see that John is getting stronger - he waves to everyone.  If you come in, he will make sure you shake his hand!  He is very alert more often and wanting so much to communicate.  Sunday was another day of rest with time on the trac collar (off the vent & breathing on his own) and sitting in the special Barton chair. 

Monday was more time on the trac collar and another opportunity in the chair, a little longer each time.  John had therapy with both the OT and the PT which revealed improving nerve return and muscle strength.  They did have to stop the blood thinners because the bleeding from the upper leg wound was causing his red blood count to drop which makes him weaker and more vulnerable.  The wound doctor came and felt there had been no damage from the bleeding, but healing has slowed down without using the wound vac.  Ultimately, the two doctors have decided John will begin one of the blood thinners on Tuesday and will be watched carefully.  Six weeks of blood thinners would probably get rid of the blood clot.

Today was an excellent day!  John was on the trac collar for 4+ hours.  During that time both the OT and the PT came as a team and gave him a thorough workout on the edge of the bed with his right leg planted on the floor.  Again, it was about "balance" and mental concentration of firing returning nerves to move/strengthen muscles.  He held his own head up the entire time.  It is amazing to watch!  After 30 minutes they put him in the chair for some continued time upright.  Then, the speech therapist came, put a special "cap" on the trac and said "well, talk to us."  And he did!  Just like that!  It was a bit hard to understand, but we were all so elated.  Then he was exhausted.

There is a lot of work ahead, obviously, and all days will not be successful. John has begun to experience a lot of pain as the nerves regenerate and often feels very restless. We are reminded it is still a slow and steady crawl, but everyone believes the worst damage of the Guillain-Barre Syndrome has probably been done.  But John is there - as he tries to smile and moves his hands gracefully in trying to express himself - not preaching yet, but certainly witnessing to a sure and steady faith in the True Physician.  Thanks to each and every one of you who remain faithful in prayer and loving support.