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.

Saturday, November 30, 2013 9:00pm

REPORTING ON A PRETTY QUIET WEEKEND

We trust that all you readers had a peaceful and grateful thanksgiving.  John has been resting a lot during the past three days - just what both doctors ordered. 

Resting did not always mean sleeping, but there were no therapists around except respiratory.  His lungs seem a bit clearer, at least there is a smidgen less coughing and suctioning going on.  He was off the vent about 3 hours yesterday (half in the morning and half in the late afternoon); today he was off 3 hours straight in the morning.  With Dr. Aslamy's real encouragement and a bit more pain medication, John did sit in "the chair" for an hour today.  He didn't like it, but he did it and did not become diaphoretic.  That's progress! Both doctors are pleased with his overall progress and some returning strength - he can raise both arms from the elbows now and waves to everyone entering the room.  The slowly returning nerve re-growth is causing more pain and some muscle spasms.

The main obstacle has become the blood thinner, Coumadin.  It has caused the upper leg wound to bleed and they had to remove the wound vac machine.  Also, they have had to re-pack and dress the wound 4-5 times since last night because of bleeding.  They are carefully watching John's blood results. 

Yesterday we were surprised by visitors: our dear friends from New Mexico, Art and Lynda Garcia with daughter, Kristen, were in town and came with Robert and Janet McPherson.  Then the Moores came down from Wickenburg.  This was a lot of excitement, but John enjoyed it without overdoing.

So, we have specific prayer needs: Pray for another day of rest and "baby steps" of progress in preparation for some good OT and PT beginning Monday.  Pray that John will be ready for the Speech Therapist to begin work on swallowing and using his voice box.  And pray that the wound will stop bleeding and begin healing again; that the doctor will find a solution besides Coumadin.

Thursday, November 28, 2014 (early morning)

A DAY OF THANKSGIVING

John's journey has continued for the past two days.  Tuesday was a pretty strong day although sitting in the chair seems uncomfortable and difficult for John.  He did remain off the vent for 7 hours.  The OT and the Speech Therapist came in the afternoon and did a remarkable workout with him.  He sat on the edge of the bed with his right foot planted on the floor as they worked to keep him upright and holding his own head up!  It's amazing the skills and insights they use to prompt his brain to learn to give those commands that will help him find a new center of gravity and balance as well as "fire" muscles to respond.  One exercise was to have him lean forward by himself with arms outstretched to give me an actual hug with nothing between us - oh! the glorious feeling of connection for both of us!  Breathing off vent and all vitals remained good and strong through this period - then he had a good nap. He was tired and put back on vent for the evening and night.  Doctors and therapists were surprised and very happy with the accomplishments.

Then came Wednesday morning - John was extremely tired right from the beginning.  He had a bad night with many interruptions, including an ultra sound which revealed a blood clot in his right arm (probably resulting from the Pic line) so now he is on more blood thinners.  He slept through much of the morning and then got into the chair.  After only 20 minutes he was having breathing difficulties and became diaphoretic with raised blood pressure.  Reclining the chair helped John.  Dr. Aslamy, the nurse and the OT were present and all agreed John "just was not himself today".  Conclusion was that the previous 2 days of hard work had indeed taken their toll again which follows the GBS pattern of up-and-down.  Prescription: bed rest, lots of sleep (which he does readily!), no physical therapies, and no time off the vent for the day.  We may begin a short time off on Thursday.  All of us need to learn more about "pacing" and monitoring during those times John shows no real stress during the workouts and "off vent."

My family celebrated their Thanksgiving Feast at the home of my nephew and his wife, Julia and Brandon Underwood because our "city workers" - firefighters and ambulance driver are working today.  I did attend and enjoyed myself thoroughly.  The food was so delicious and it was a wonderful chance to be with my family. My parents are frail, but they persevere and are in such good spirits. Hayden, (3) and baby Colton (4mos) laughed and sparkled and carried our thanksgiving forward into the future.

My heart is full of thanksgiving, just as it is each day, on this day that is set apart for thanking the Lord.  The struggles have been many - and will continue - but John has beat all the odds so far and is still with us with a clear mind and in body, though weakened, and in his faithfulness in the healing power of Jesus Christ through the work of the Spirit.  Praise the Lord!

My prayer for you today is Paul's prayer for the Philippians:

I thank my God every time I remember you,  constantly praying with joy in every one of my prayers for all of you, because of your sharing in the gospel from the first day until now. I am confident of this, that the one who began a good work among you will bring it to completion by the day of Jesus Christ.  It is right for me to think this way about all of you, because you hold me in your heart, for all of you share in God’s grace with me.   (Philippians 1:3-7 NRSV)

Monday, November 25, 2013 9:30pm

HOORAY!  TWO GOOD DAYS IN A ROW

Yesterday I held off posting because of the up-and-down nature of John's struggle.  But tonight I am so happy to report that John has had two good days in a row!  Here is the report -

Sunday:  John started out quite alert and ready to tackle "the chair".  He stayed in the chair a little over two hours and was off the vent for an hour before tiring.  The lung infection is improving, but it also means more coughing (which is returning for him) and more frequent deep suctioning by the therapists.  John has learned to signal for help and is always glad when this is done because he immediately feels better.  He had a nap after the visit by Dee Ann and Tom.  Then our friends, Mary Danforth and Jeanette Miller, came to help out.  Mary was the witness and Jeanette was the Notary Public who witnessed John's answers and his signature to establish my Durable Power of Attorney.  This was such an important accomplishment and I am so grateful to these two ladies.  The rest of the day was peaceful and John got a lot of rest. 

Monday:  John struggled to wake up this morning, but was alert for the visits by his doctors and he participated in a good workout with the OT.  His right side is definitely weaker than the left, but the therapist felt he was getting some muscle response which has been a concern of the neurologist. John was eager to get in the chair, but staff was short and it was noon before that happened.  I left him in the chair and off the vent to go eat lunch, only to return and find him back in bed.  Evidently, they thought he was too tired because he fell asleep.  An hour was far short of the three hours in the chair we had been aiming for today.  However, he was off the vent for four hours with no problems. His leg wounds were inspected and approved by the special wound doctor and then re-dressed.  He also worked hard with the PT on his legs.

But here is the best part!  The Speech Therapist happened to come in for another reason and offered to suction John's lungs.  She then asked John if he was willing for her to check for his voice which he agreed to do.  By clearing his throat well and using her fingers on the trac opening to work with his own breathing in and out, John said words! His voice worked!  She had him turn to me and he said "I love you!"  We all wept with such joy!  The Lord is so good.

These milestones renew our hope and we are eager to progress, but we are still in the tunnel and the road is long - and will be rocky.  Despite the exclamation point above, let me remind you readers, that "a good day" is relative and progress is measured in inches (or less) - and the Guillain-Barre is still fighting to be in charge.  John, however, is tough and determined - and your prayers invoking God's faithfulness and mercy shall surely bear fruit in His good time.  As always, thank you.

Saturday, November 23, 2013 10:15pm

A BRIEF UPDATE

Each day does not give a clue to the changes that may take place the following day.  It turns out that John has a "resistant strain" of bacteria in his lungs, so today he was put in isolation.  Basically, this just means everyone robes up and wears gloves when entering the room, primarily because it is dangerous to other patients on the floor.  Three doctors seem pleased that the offending bacteria could now be attacked with specific drugs and a new antibiotic was started today.  John was not as good today at all - perhaps primarily because his lungs are really laboring even on the ventilator. Perhaps just because Guillain-Barre is just being nasty again.  He did, however, sit in the chair for 1.5 hours. It was a real struggle for him, but the result was that the respiratory therapist was able to suction a lot of "gunk" out of his lungs.  When I left this evening he was sleeping soundly and breathing easier.

Saturday, November 23, 2013 6:00am

RESTING AND WAITING ARE PAYING OFF

The roller coaster for John hit a more even spot on Thursday.  Blood pressures and oxygen levels evened out within acceptable levels.  He remained in bed and slept a lot, but was able to participate in the very low level PT and OT in his bed - mostly stretching and bending.  The neurologist came in to consult with our primary doctor.  Their general conclusion is that he is generally stronger than when he left the ICU despite all the setbacks, many of which "fit" the Guillain-Barre Syndrome.  They do observe slight improvement in a few spots of muscle tone.  The decision was made to "stay the course" and watch closely rather than begin another round of IVIG treatments. He ran low-grade fevers off and on, so they lab tested everything looking for infection - except his leg wounds which continue to heal marvelously and cause virtually no pain (only during dressing changes every 2 days).  Right now he is no longer complaining of "phantom" leg pain. 

He also spent almost 2 hours sitting in his special chair again - the first time since Nov. 17.  Surprisingly, John did not want to sit up and was quite anxious - probably a result of the over-extension of the previous weekend which caused such distress.  He continues on the ventilator and it will probably be early next week before any attempt is made to begin weaning him off again.  John had been switched to a different nutritional food through his tube and is tolerating that very well and getting stronger. This was a day with no setbacks.

When I arrived Friday morning I learned John did have pneumonia again, so he is now back on two IV antibiotics and increased suctioning which should take care of it.  But the bright spot was that John was more alert and engaged in "conversation" with me.  This means he moves his tongue and eyes vigorously and I try to interpret! Also, he wanted the TV news turned on and his glasses! This is the first time since surgery in Chandler and was exciting - it lasted about 8 minutes but made my morning!  Now it is not unusual to see John trying to move his hands and fingers and wiggling his foot as well as turning his head.  It is so exciting!  He got lots of rest today and did not sit in the chair, but it felt like a good day.

As for me, I really appreciate the notes of encouragement about my own well-being that I receive. And I continue to enjoy reading your notes to John.  I talk and/or text with all the children everyday. A friend took me to lunch on Thursday and another on Friday.  These "outings" from the hospital room and the conversation were such a help. Dee Ann and Tom brought my parents to see John and we went out to dinner on Thursday.  As many of you have mentioned, this is a very long and lonely road for me, but I try to focus on this day and not the immediate unknown future.  I try to eat regular meals and sleeping at night has not been a problem.  When I come home sometime between 9-10pm, I putter a bit with the mail and then go to bed - so exhausted that I fall asleep immediately.  God has been good in providing the peace of mind I need to sleep.  I know that John is going to beat this GBS monster.  The excellent medical care, your prayers, God's faithfulness, and John's inner strength will make this happen.

Wednesday, November 20, 2013 10:00pm

END OF WEEK FOUR

Amy inspired us all with her writing on Monday night and I am so grateful for the light she can shed on this difficult situation.  Her presence, like Elisa's and Paul's, always brightened the room for John and me as well as others.

Monday and Tuesday were rough days and nights for John.  Backward steps in many ways and very discouraging - erratic blood pressures (high and low), low oxygen levels, fevers, trouble with feeding tubes just to name a few things.  General summary by both primary doctors is that the Guillain-Barre is still active and running the show, not really in retreat yet.  There are very small improvements, primarily in his mouth, including gagging and some weak coughing now.  It is clear that the pace of the removal from the ventilator on Sunday and using just the tract was too swift.  A more prudent speed and course of action has now been put in place.  Eventually we will move forward daily, but for now it is still a rough roller-coaster ride.

As always, when he is not sleeping, John remains optimistic and eager for his therapy sessions.  The family continues to be grateful for your prayers and the many, many notes John is receiving.

To Keep On Breathing

I'm tired, I'm worn.

My heart is heavy

from the work it takes

to keep on breathing.

So begins the song, "Worn," by Tenth Avenue North, which came to mind as I left my Dad's hospital room tonight.  I'll fly home to Texas tomorrow after spending the last 8 days here in Phoenix with my Mom and Dad.  Those first lyrics seem especially fitting, as the good news of the last couple days is that my Dad spent over 20 hours breathing on his own, without the aid of the ventilator!  This indicates returning strength and responsiveness in his lungs and is a critical step in his recovery.  The not-so-good news was that some of those hours were too much at once so he ended up pretty exhausted by "the work it takes to keep on breathing."  Ensuing conversations with his doctors and nurses have us moving forward with a more gradual and manageable plan for weaning him off the ventilator.  This process of his body healing itself is bumpy and slow.  So we'll all be pacing ourselves.

My soul feels crushed 

by the weight of this world

You've been praying, calling, sending cards, and posting messages of encouragement because you know that this journey has been and will be hard.  Not just for my Dad, but for all of us - especially my Mom.  She's carrying a pretty crushing weight right now.  Your continued support of her from near and far, and your ongoing prayers are so appreciated.  

It's the chorus of the song, though, that spoke to me in a new way as I thought about my Dad's illness:

Let me see redemption win.

Let me know the struggle ends,

that you can mend a heart 

that's frail and torn.

I wanna know a song can rise

from the ashes of a broken life,

and all that's dead inside can be reborn.

'Cause I'm worn.

As we wait, all of us together, for this struggle to end, for deadened nerves inside to be reborn, for a song to rise from the ashes of a broken life - we cling to the promise of redemption.  We put our trust in the God who is continually redeeming every worn, weary, broken, devastated, desperate corner of his creation.  God's working redemption.  One nerve, one breath, at a time.

-Amy

Saturday, November 16, 2013 4:00pm

A REAL BONUS AT SELECT

We are on the third floor of the hospital and looking out a window over the old front entrance, straight down 4th Avenue and clear across the city of Phoenix directly at the tall spire of Historic First Presbyterian!  I even brought the binoculars for a better look.  John can't see that yet, but I describe it all to him.  What a blessing the Lord has provided - a real inspiration for us.

Life here in Select Specialty Hospital is turning out to be a good thing.  From the first day yesterday John has been given a lot of attention by therapists and doctors and great care by his nurses and CNAs.  They are efficient, quick to respond and friendly - obviously enjoying their work with one another.  John did a good job at his PT/OT evaluation.  The head of OT who had taken us on the tour and conducted basic intake info from us before arriving was very upbeat and happy with the routines she put him through - achieving a bit more than she expected. She has a lot of experience, including her mother who struggled for some time with GBS.  All 3 doctors came by.

Biggest News - and scariest thought before hand: John was put into a special reclining chair and then taken off the ventilator to give it a try! He managed to maintain for 2 hours!  This is the first step towards some freedom from the machine and working towards the goal of some speech eventually through the trach. We did get some hand/arm exercises in, but otherwise he has been exhausted and slept much of the day.  Seems to have little pain which is a real blessing and keeps his blood pressure and heart rate in good numbers.

Thanks for continuing to read the blog and supporting us with your prayers.

Friday, November 15, 2013 5:45am

A BRIEF UPDATE

John was transferred to the Select Specialty Hospital unit on the third floor of the original St. Joseph's Hospital.  After waiting the entire day, the transfer took place around 5:30pm - not an optimum time nor executed in the best form, but safely.  (The race through the halls is a story for another day!) We have found that each time John was moved it took place just before shift change and after the hours that most staff except the nursing staff was gone for the day.  That provides for little welcome or thorough intake.

John slept throughout much of the day, whether because of the newer pain medication or simply the demands and symptoms of Guillain-Barre is uncertain.  He is maintaining well on the ventilator.  John did do a splendid job when the two physical therapists had him sitting on the bed - even holding his head up briefly!  Our specific prayer need is for the nerves that have been (and may be continuing to be) ravaged by the GBS to begin to repair themselves and give John the opportunity to work actively towards a recovery, including a weaning from the ventilator.

Wednesday, November 13, 2013 9:45pm

CHANGES AHEAD

Tuesday turned out to be a good day for John.  He was more alert and engaged.  Fred Davis, a good friend, stayed with him in the morning while Amy went with me to a doctor's appointment.  Upon our return he was moving his mouth some and making a bit of audible sound.  He managed to sit on the side of the bed supported entirely by the physical therapists for a longer period of time - and bounced his right foot as it rested on the ground!  Still little response or strength from his arms and neck/head.
The central IV line was removed - only one IV left to administer antibiotics. 

We have been told repeatedly that there will be constant ups and downs for a long time.  Today John seemed to have little energy after yesterday's work.  He slept through the morning.  However, in the afternoon the therapist really got him working and we saw glimmers of progress.  He really seemed aware that this is work that he has to do - and the blood pressure did not go as high.  In late afternoon his feeding tube was removed from his nose and a feeding port was inserted in his stomach.  This will be safer and more effective for the weeks ahead.

But change is ahead - tomorrow John will be moved to Select Specialty Hospital, a step down in acute care.  This is a separate hospital within St. Joseph's which will specialize in weaning people off the ventilator and still provide the less acute care that John needs.  He will also receive daily PT and OT care.  Please pray that this will be a smooth transition for him.

Tuesday, November 12, 2013 5:45am

A BIRTHDAY REPORT

John turned 70 on Sunday and although the party in the ICU was subdued, it was a celebration of John's life and the blessing he has been for so many people.  We celebrated his gifts of humor and patience, his acceptance and encouragement of others, and his constant faith and abiding love of the Lord.  As his family, we remembered and were grateful for the joy he brings to our lives.  Our immediate family - Elisa & family, Paul, my parents, sisters, brothers, and nephews - visited John throughout the day and then gathered for supper and a "pumpkin pie birthday cake."  Then we sung a raucous rendition of "Happy Birthday" which we recorded for John.

And from all of you - his family and friends - we were humbled by your cards and greetings.  Over 150 birthday cards (not counting the get well notes) were hung up to decorate his room!  It was just awesome for John to see and for those who passed by or provided his care for him.  It gave them a glimpse of the "person" that is John inside that quiet body.  John was unable to listen to or focus on many cards, but we will get a lot of joy from looking at them over and over in the weeks ahead.
Thank you! Thank you!

Physically, John is very, very weak.  He continues to only move his head slightly and his fingers on command.  He sleeps a great deal of the time.  Even though we talk to him regularly, he gives little response to the conversation and just drifts off again.  He does respond to the appropriate requests/commands as the doctors, nurses, and we check, so we know that his cognitive ability is still good.  Although I worry, the doctors and nurses tell me it is natural that he sleeps because his brain and body are working so hard to heal and recover.  It takes all of his energy.  Yesterday the wounds were cleaned and checked - they continue to heal well.  Once again the physical therapists sat him on the side of the bed a few minutes until the pain pushed the blood pressure too high.  Waiting for the healing from the Guillian-Barre will be the long, slow rhythm of our days.  Keep praying.

The Hoods set off for Utah early morning yesterday and arrived home safely. Paul returned to work and then home to Veronica and Dillon.  Amy arrived at suppertime and will stay with me for a week.  Please say a prayer for Joshua and the kids at home, but also for these lovely adult children and their families who continue to give me love and support as I stumble on this new path with the uncertain days.  Each day I look to God for wisdom, strength and endurance.

Saturday, November 9, 2013 10:00pm

ON THE EVE OF JOHN'S 70TH BIRTHDAY

Since my last post Friday morning, John has received the final two IVIG treatments through his central IV line.  It can cause flu-like symptoms of aching pain and that seems to have been the case today.  They have downgraded his pain medication, but the new RX seems to be working for him. He reports almost no pain from the amputation, but a lot of back pain - perhaps from lying down so long.

The acute care doctor did insert a tracheostomy yesterday afternoon with no problem.  It has been a great improvement for John to be hooked to the ventilator this way and no tube down his throat.  His vital signs continue to be good and he has stopped most IV medications.  Although he cannot speak, he tries very hard to say "yes" with his lower lip when communicating. There is no control over his tongue or mouth.  Moving almost any part of his body by himself was not possible yesterday, but today's tests by the neuro doctor and the physical therapist revealed some "firing" of nerve/muscle impulses which was encouraging, however tiny and slight!  Because every case of Guillian-Barre is different and John's case seems to be quite unique (and compounded by the previous infections and amputation) it is very hard to predict the course of the illness.

Yesterday Stephen brought the kids to the hospital and we all had lunch out together.  There is a family playroom and we enjoyed time there.  Ava was able to visit her grandpa and talk to him - she was very brave in such a new environment. 

Today was quiet for Paul, Elisa and me with John.  We worked on birthday party preparations and  Dee and Tom came up to help out.  But the big event was the physical therapists getting John to sit on the edge of his bed!  He was not able to help at all - not even his head - and these two women were amazing.  The therapist really pushed him through a few exercises and we saw some movement in a his right foot, left leg, and hands. When his blood pressure went too high, it was time for lying down and a good long nap - for John!  But the three of us were also exhausted from the tension of watching this "workout."

Enough for tonight - tomorrow is an important day.  I think there are over 125 birthday cards decorating that room!  And the balloons are coming!  Thanks to everyone for the cards, but more importantly for the prayers and the love.

Friday, November 8, 2013 9:30am

A REAL GAME PLAN

Word came late last evening - we have a diagnosis!  John had a spinal tap late afternoon yesterday and Dr. Ortega called at 8:30pm with the preliminary results:
John has Guillain-Barre Syndrome (GBS). 

This is a disorder in which the body's immune system attacks part of the peripheral nervous system.  The exact cause of Guillain-Barre syndrome is unknown, but it is often preceded by an infectious illness and luckily, it is uncommon, affecting only 1-2 people per 100,000. There is no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness.  Most people recover from Guillain-Barre syndrome, though some may experience lingering effects such as weakness, numbness or fatigue.  For more information, check out this link.



John was started on IVIG treatment immediately last night and is receiving his second treatment today.  There have been no side effects.  His blood pressure remains on an even keel and he is now less sedated.  He is unable to speak, but does work to communicate through squeezing our hands and moving his head.
He remains on the ventilator to assist with his breathing, but will be most likely have a tracheostomy sometime in the coming days.

This recovery process will be long and measured in small increments in the weeks and months ahead.  He will need to recover nerve and muscle tone and strength before moving forward on the leg prosthesis.

The greetings and birthday cards are certainly filling our mailbox!  Thanks to all of you for the outpouring of care and support.  Thanks for the warmth of God's love we feel surrounding us through your prayers.

Thursday, November 7, 2013 8:30am

ANOTHER DAY OF WAITING

Wednesday was mainly another day of rest for John.  The nurses carefully watch and control meds in attempt to keep his blood pressure within desired limits.  They needed to remain steady for 2 hours in order for John to have the necessary MRI - he succeeded by late afternoon and then maintained for over 6 hours.  The MRI was done late at night and he tolerated it well.  Now we are waiting for results.  He does have a bit of pneumonia and a low fever, but has antibiotics for that. 

The good news was his wounds are healing very well!  The wound care team exclaimed how great they looked when the dressings were changed and the wound vac was applied to both sites.

We had a nice time while he was a wee bit awake when the four of us (Paul, Elisa, Stephen and I) connected with him in conversation. He answered by squeezing hands and even nodding his head!  A few family members and a pastoral friend were able to say hello briefly. 

We sure hope for some answers - or even some clues to this mystery - as we go through Thursday.

Wednesday, November 6, 2013 6:45am

A DAY OF REST FOR JOHN

Tuesday was pretty much just a day of rest for John as he remains on the ventilator.  Careful monitoring of his heart and blood pressure kept him on an even keel.  The Critical Care Doctor's goal was "comfort and rest" to gather strength for more testing ahead as they search for that illusive "root cause".  He feels John's body has been under a great amount of trauma and stress.  John was able to take in high protein/high calorie liquid through his feeding tube and sustains it well.  This is a critical piece to recovery. 

Now Paul and I are off to see what today brings.  We are so grateful for the minutes when he is under less sedation and we are able to communicate through his hands squeezing ours.  The Hoods drove down from Utah and we will have Stephen and Elisa join us today.

Monday, November 4, 2013 10:15pm

AN UP-AND-DOWN DAY FOR JOHN (actually posted 11/5/13 at 7:00am)

John had a stable night on Sunday and was resting when I joined Paul at the ICU.  Through the morning they gradually reduced the amount of oxygen he was receiving and his own levels stayed steady where necessary.  At 1:00 the intubation was removed and he simply had a nasal canula.  All the vital signs looked good.  He was still sedated a bit and unable to talk with his feeding tube in place, yet continued to respond to questions and commands.

After lunch they made an attempt to insert a "pik line" in his arm, but were not able.  Then the wound team changed the dressings on his leg and hooked up the wound vac - at that point, John's blood pressure dropped drastically and he was in trouble again.  He was put back on the ventilator and given critical care treatment immediately.  A central line was inserted.  He is now stable again and resting quietly.  Finding the balance of the pain meds and other needs he has is quite difficult - all have side effects.  Finding the root cause of all these problems still is illusive.  He is continuing to fight, but I know he does not know what is happening. 

Paul stays with him in ICU at night so I can try to sleep at home.  Thanks for your prayers and concerns.

Monday, November 4, 2013 6:45am

NEED FOR MORE PRAYERS

Just a quick note before rushing to the hospital -- John's difficulty with swallowing increased to difficulty with breathing and advanced rapidly.  When we arrived at rehab yesterday morning, John could not speak clearly, was on oxygen and could barely raise his arms off the bed.  A CT scan and an MRI had ruled out a stroke and preparations were being made to transfer him to the Neuro/Telemetry Unit at St. Joseph's (across the walkway).  While waiting for transport, at noon Elisa and I were standing with John when he had a seizure and people rushed in when she pulled the alarm.  There was a run through the halls to the Neuro/Telemetry Unit.  When we arrived there, John was in full distress and rushed into ICU with a team immediately putting him on a ventilator and heart monitors. We believe several days of failure to swallow allowed secretions to slowly fill his lungs.   It was most likely an hypoxic seizure caused by a lack of oxygen to the brain.  So far it looks like no neurologic damage and he is in stable condition.

My family rushed in to support and Paul arrived last night and stayed with John.  Elisa is going home to her children and husband today.  Please keep praying.  Thanks.

Saturday, November 2, 2013 10:00pm

On a Bit of a Roller Coaster

Friday was a good day for John.  He worked really hard at both physical therapy and occupational therapy and was making progress.  But it was hard work!  A main task for occupational therapy was a real shower! That was a task, but John felt so wonderful!  He was even able to shave himself - all this the first time since Oct. 21.  Right after that the wound care team came and checked, cleaned and redressed the wounds.  Both sites were started on the "wound vac" which really makes progress in the healing.  The only bummer in the day was John's continuing difficulty with swallowing and coughing/choking at times throughout all the workouts.  John was just exhausted and fell asleep early, so Elisa and I were home by 8 pm for the first time.

Today Elisa and I planned to go in around 10 am since the schedule is less intense on the weekend. However, John called at 7 and was in "a bit of trouble" after a bad night and wanted us right away.  Turns out he could not swallow anything at all! Even a small ice chip would have him coughing it right back out and he had had no pain meds.  It was a rough day - just can't go into all the details, but he had many tests and many were negative (praise God!) including his heart is doing well.  But he is back on IV fluids because he is severely dehydrated and also on oxygen for the first time.  Continuing severe anemia may be a real culprit in his increasing weakness.  Later tonight he will have an MRI of his throat area and head - we'll look forward to results in the morning.  These are crappy setbacks, but John will persevere as you well know.  Just keep on praying.

Thursday, October 31, 2013 9:30pm

THE MOVE WAS ACCOMPLISHED

Yesterday was a very, very long day.  The paperwork and preparations for the transfer to St. Joseph's Rehab Center seemed to drag on and on - in fact, at 2pm it looked like it would not happen for another day.  Then suddenly everything was cleared and we packed up the room.  John's dressings were changed and the wound vac removed (to be replaced at the new facility).  The wonderful staff just kept coming by to say goodbye.  The surgeon made a final visit until John sees him in two weeks and he was upbeat and positive about the future for John's healing and later prosthesis.  So, the ambulance crew loaded John up and set off across for Phoenix while Elisa and I followed in the car.



It was late before John was settled in his new room and Elisa and I left the rehab center.  Tired and with no supper, we shopped at Walmart at 10:30 buying loose gym shorts for John's therapy sessions.  Not sure he cares about being stylish, but we were good shoppers.

Elisa and I arrived at the center at 7:30am and John's intake had already begun.  The whole day was a parade of doctors, therapists, administrators and nurses.  The gyms and workout room are amazing. What a wonderful place!  They had John working throughout the day.  The only setback was a bit of trouble with his wound dressings.  Several people were surprised and impressed with how much he could do already after the good physical therapy at the Chandler hospital.  There was immediate work on life skills for daily, independent living.  John dressed himself - first time in clothes since 10/21! And he loved the freedom and control of a wheelchair of his own!

More work tomorrow morning starting at 7:30, so it is bedtime for Elisa and me.  John was down at 8pm. The rehab center says that the best time for visiting is between 3-6pm after all the therapy is done for the day and before dinner.  The weekend is more open for visitation.  It is probably better if you give me or John a call before coming.  Thanks for your continuing prayers and all the greetings and cards!  They are bright spots
in John's days!

Wednesday, October 30, 2013 5:30am

MOVING DAY!

Today John will be transported to the Neuro Rehabilitation Center at St. Joseph's Hospital and Medical Center in Phoenix!  It is a red letter day on John's journey to recovery.  St. Joseph's has a national reputation for successful, specific and individualized programs for treatment of brain injury and spinal cord injuries as well as other complex medical conditions including amputations. John is excited and ready to begin the work ahead with an excellent staff that he has seen at work with his parishioners in the past.

Yesterday was the best day yet for John.  The good news of the drop in white blood cells in the morning followed by good reports when his dressings were changed were welcome news.  With the physical therapist assisting, John walked 65 feet to the nurses' station, rested a bit in a chair, then walked back to his room.  What an effort!  Also, the G.I. troubles (hiccupping, coughing, choking) symptoms resulting from the 3 surgeries is beginning to improve which makes eating less difficult.  All attending doctors "signed off" for his transfer and the rehab center accepted John as a patient.  Last night John declared he " felt the best he has felt since this ordeal began.  Certainly, his voice, concentration, and clarity of thought were better.

We will continue to keep you informed.  For people in the valley here, I will let you know when visiting hours are available.  John loves the greetings, but they are best sent to our house.

Our grandson, Josiah (3), in Texas expressed our excitement best:

Tuesday, October 29, 2013 - 8:30am

MAKING PROGRESS!

Coming in late each evening, I do better on these postings in the morning.  Monday was another busy day for John, but there was a lot of good news.  When the "wound care" specialists came to undress both the upper wound and the stump, they did not find infection! Where the stump has been closed neither they nor the infectious disease doctor could not see any necrotizing tissue.  Great news!  John is looking better and stronger.  However, the lab tests don't look as good which is frustrating.  The white blood cell count continued to climb and that will have to turn around before he can move onto to rehabilitation.

Working hard & toting the "wound vac machine"

Elisa stayed with John throughout the day and witnessed his remarkable walks with the physical therapist.  He has passed the physical therapist's required benchmarks for moving on to rehabilitation.



A well-earned nap after therapy!

Paul and I toured two acute care rehab facilities in Phoenix.  We have all agreed on the unit at St. Joseph's Hospital which is just north of the church in central Phoenix.  The doctor supports this and today they may begin the paperwork, etc. that could take 2-3 days.  Our dear brother-in-law, Tom, brought my parents (both in wheelchairs!) to visit and we all had a conference with the surgeon present and rejoiced at his encouragement and optimism.  Paul flew home with a lighter heart.


So...this morning's latest report: John's white blood count dropped from 23,000 to 16,700!  Praise God! There is other lab work they are watching, but we believe John will be on his way to rehab in the next few days. That is where the real work will begin and John is eager to start.  Your prayers and support are working.  John and all his family are very grateful.  Above all, we praise the God who holds John close and has provided just what was needed in this crisis.

Monday, October 28 Update, 7:00am

Sunday was another long day at the hospital.  John looked great when we arrived in the morning - very alert and bright eyed.  He had slept better than the previous night, but still wakes up frequently, both on his own and for numerous nurse checks and starts of new antibiotic drips.  It was very exciting to watch him with the physical therapist as he raised his left leg and worked through the strengthening exercises.  Then he got himself out of the bed with the walker and hop-walked about two feet, turned around and came back - with only one assistant this time!

There were two main concerns: his white blood count slowly is climbing up rather than gradually going down which can mean continuing infection.  Also, his right foot/leg has swollen with fluid, perhaps just from the IV solutions and the inactivity.  The doctor had them remove the dressing and unpack the upper leg wound with Veronica present.  The wound looked good, is draining well and no visible signs of infection, but really is very deep.  An MRI was ordered for that area to search for deeper infection.  An ultrasound scan was done on the right leg to be sure there were no blood clots.  These took up about 3 hours in the middle of the day.  He is on a new pain medication which is working very effectively and makes a real difference.  The wound was re-packed and dressed with John feeling minimal pain, so he was really grateful for the new drug! When we left last evening, we did not have any results, but are hoping this is good news - at least nothing urgent that brought the doctor running.

In so many ways, John looks healthy - he is getting stronger, his color is good, his breathing and heart are good.  There are still issues with hiccuping/belching/coughing/swallowing which interfere with eating.  We continue to think this is a result of the intubation and anesthesia during the surgeries. We're hopeful that's improving, since he spent over an hour talking with visitors without it bothering him.

Veronica and Dillon were with us until they left to catch their plane home.  Little Dillon's voice and happy activity certainly added cheer and thoughts of the future to our day. Of course, Veronica has been an amazing help professionally, but her positive, encouraging words and presence were even more of a blessing.  A real highlight of the day was a visit from Tony and Joy Cook (Tony is Stated Clerk of Grand Canyon Presbytery) and also from Fred and Judy Davis, dear friends from our days in Las Cruces, NM before they were called to Washington.  Fred is a miracle of God's care and faithfulness as well as the power of prayer following a terrible accident when we were all together there.  John and Fred share a special friendship - and they just moved to the Valley from Washington!  All these friends lingered and talked and prayed - for all of us it was a powerful, uplifting time.

We're headed over to the hospital now in hopes of being there when the doctors visit John.  Paul, Elisa and I hope to visit two rehab facilities and then make a decision for a recommendation. Paul will be flying back to California this evening.

Saturday, October 26 Update, 10:00pm

Following the early birthday party with our 3 kids this morning, the rest of John's day started with a warm sponge bath and sprucing up by Elisa.  It has been a pretty good day.  Nurses have worked closely with John to control pain as much as possible.  A good part of the day was spent in the recliner.  All four doctors visited in the late afternoon and seemed pleased with the current situation. Dr. Motzkin, the surgeon, continues to be optimistic as the infection seems contained.  John is doing a great job of using his quads to raise that left leg and work on strengthening.

Veronica, Paul, Elisa and I visited four different acute care rehabilitation centers today.  We probably reduced the selection to two, both at a distance from where we live.  A decision will need to be made next week so advanced preparations can be made.  We appreciate you reading this blog and continuing your prayers.  Feel free to share the link with others who may know John.  He will be in much better shape for company next week.

Bologna (below-the-knee) Amputation October 26, 2013

A good hike at Neskowin Beach in Oregon June 2013

In the early morning hours of Tuesday, October 22, 2013, John's left leg was amputated. It was a fast and shocking turn of events, especially considering that just hours earlier we were driving home from a lovely visit with our daughter, Elisa, and her family in Utah. 

Many people have inquired about his progress, so we have created this blog site to be able to keep you informed of what is happening with John's recovery. I will be updating this periodically. Please feel free to pass on the link.

This first post is intended to cover the events of the last five days.

Monday 10/21/2013: We were wrapping up a great 4-day visit in Layton, Utah with the Hood family. John had mentioned to me briefly that his left foot was bothering him and he had been treating with cream from the drug store for some athlete's foot for 2-3 days, thinking maybe he had some fungus. On Sunday, we began to see some redness and swelling in his foot. Because he has had a previous issue with infection following an injury to the shin, we figured he might need some antibiotics, so we started out on our 12-hour drive back home to Phoenix. During the long drive, John's foot became progressively more red, swollen and painful, and by the time we reached Las Vegas, he was visibly quite ill and the intense  redness and swelling was rapidly spreading upward. We actually considered stopping at that point but figured it was best to push on through and get home. I took over the driving, and John was reclining with his leg elevated. By the time we arrived home in Phoenix at 10pm, it was clear that John was ill enough that we should go directly to the hospital. When we got to the emergency room at Chandler Regional Medical Center, we were rushed back through triage, and it seems that before we knew what was happening, the orthopedic surgeon (Dr. Motzkin) explained that the infection in John's leg was extremely aggressive and needed immediate surgery.  The toes and foot were already beyond saving.  John and the surgeon decided to proceed with amputating his left leg below the knee in order to save his life.  John looked down at his leg and said "Go ahead and do what you have to do."

Tuesday 10/22/2013 Dr. Motzkin took John to the operating room at 3:30am. He performed a below- the-knee amputation but was concerned because there were areas of redness and swelling in John's upper left thigh as well.  Throughout the first several days, he was very clear he was really fighting the beast of an aggressive infection. He and the rest of the doctors on the team were seriously concerned for John's life. My sister and brother-in-law, DeeAnn and Tom, came to the hospital at 2:30am and stayed by our side throughout the night and day.  My brothers also came. Thankfully, Amy was able to come from Texas by Tuesday evening and she has been a wonderful support for her father and me.  

Wednesday 10/23/2013 Though originally Dr. Motzkin had planned to take John back to surgery in 48 hours (which would have been Thursday), in less than 30 hours, precipitated by John's increasingly high white blood count, temperature and atrial fibrillation, he took him again to urgent surgery at noon. In the second surgery, Dr. Motzkin removed a great deal of dead tissue from John's lower leg. He also opened up his upper thigh and drained an infection.  This procedure seemed to correct his atrial fibrillation immediately. The good news was finding strong, healthy muscle at the amputation site. John tolerated both of these surgeries amazingly well and in great spirits. A highlight of this day was finally reaching Paul, Veronica and Dillon on vacation in Colombia.  John was really encouraged to speak with Paul late in the evening.

Thursday 10/24/2013 Nice good, busy, uneventful day. We knew his white blood count was still high and he had lost a lot of blood. We were not out of the woods, by any means. However, John's spirits were high, his fever was down, his pain was well controlled. He was  sitting in a recliner part of the day.  We knew that Dr. Motzkin was planning a repeat surgery on Friday, but for today, John could eat more than strawberry jello and enjoy his visitors.  At one point there were six ordained clergy in the same room!

Friday 10/25/3013 Elisa arrived at mid-day. After a long day of waiting for surgery, John returned for a third time to the operating room.  After a humorous moment in which Dr. Motzkin was talking about below-the-knee amptuation versus bologna amputation (you all know John's humor, which has been amazingly present throughout this insane week). The surgery took twice as long as planned, but Dr. Motzkin returned and for the first time told us he was "cautiously optimistic". He found no evidence of the bacterial infection in his left leg stump and the upper thigh was continuing to drain well with "no evidence of infection continuing to spread upward." In this surgery, they had to take more bone from John's left leg and worked on actually closing the wound. Dr. Motzkin believes he has a good prognosis for a prosthetic and they will be carefully watching the healing process. We are all feeling hopeful. Paul and his family arrived just as John returned to his room.  Certainly, this was the most difficult and painful surgery, and the next few days will likely be challenging as John's pain seems much increased. We expect he will be ready for visitors by the first of the week. He does love mail!

Saturday 8am: Celebrating Amy's and Paul's birthdays before Amy leaves