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Survivor 48
submitted 28 May, 2003 by Survivor 48
ok here goes! I will thank everyone I
need to @ the end!
On August 5th 2001 it was a beautiful Sunday evening on my small patio on
the 2nd floor of my small one bed room apt when all hell broke loose! I
had just watch my nephew Nick, play baseball @ the local minor league
baseball park, playing as a sophomore for the local area jc's the previous
Saturday! It was just a beautiful weekend! My sister Lori and my mother
Ann were there with me coming from my home town of Oelwein to where I
lived @ the time in waterloo!
OK so its now Sunday evening around 8pm!I had earlier in the weekend
discovered that my phone did not work so I was going to get that checked
into in the morning! I was just winding down from a great weekend spent
seeing my nephew Nick play baseball among other things and was looking
toward another evening with my favorite food and beverage! You see on
Monday mornings I went in later than any other day driving to Waverly 25
miles away!
So I was grilling steak on patio like I had done dozens of times before! I
was also enjoying Sunday night baseball on TV and also doing something on
my "WEB-TV" MY COMPUTER @ THE TIME] When I went to get up to take my plate
to the kitchen to put in the sink when all of a sudden I felt dizzy and
could not see very well!
so
I tried to call 911 then realizing I could not call out! I eventually got
to the web and tried to scratch out a message to my mother in oelwein 40
miles away! I tried saying something was wrong and help, but it came out
like this"dbl vision-no phone going out, but yes coming
in, headaches,,,respeech, qwerd breathingegue5" and some how I was able to
send that note well I will tell if my mother got it and if she got back to
me in chapter 2!
CHAPTER 2
SURVIVOR 48, MY STORY! Well 1st miracle! ,Mother who rarely has her
[web-TV ]on so late in the evening, but this particular night she was !!
thank God! she called after what seemed like hours but was just a few
minutes as I could not even get out of my chair! I spoke to her in a
panic, big time!!! I slurred out something that sounded terrible to my
mother but I got the message across some how! my speech was slurred but I
finally got out the words" call landlady" now!,,,,well she got the message
somehow and called as she insisted on having the landlady's phone # and
name when I moved in the previous year!!!! So now I wait again, after
having to hang up on my last hope for survival!!!!After what seemed like
an eternity [s] I got a phone call from the landlady and was asked what
was wrong!!! well with my slurred speech getting worse by the minute I
tried to tell her what was wrong even though I had no idea what was wrong!
So any way another miracle, her two big sons were home which is a big
rarity! There are never there!! they came runny up a flight of about 20
stairs and came in to see there was definitely something wrong with me!
They without hesitation picked me up and tried dragging me down them same
20 steps as I weighed nearly 300 lbs and very tall, not to mention limp
and in a state of shock! We took my car and one other car and as soon as
we got the hospital [closest one but not my 1st choice] they dragged me
out of the car and into the emergency entrance!!! This is where I lose my
memory all together! so chapter 3 will be from e-mails and notes taken by
my brother Jay and dear mother, Ann!
[THIS CHAPTER IS
MOSTLY FROM BROTHER JAYS E-MAILS NOTES AND MY REMEMBRANCE OF WHAT ALL HAD
BEEN TOLD TO ME LATER!]--------------------- MY SISTER, WENDY, WAS THE 1ST
TO ARRIVE @ THE HOSPITAL AFTER MOM HAD CALLED HER AND TOLD HER SOMETHING
WAS REALLY WRONG WITH HER OLDER BROTHER ! AUG 6TH 2001 !
SOMETIME DURING THE NIGHT, EARLY MORNING SCOTT HAS SUFFERED A CARDIAC
ARREST AND WAS ON A BREATHING MACHINE AFTER SOME DISCUSSION BETWEEN WENDY
AND THE LOCAL HOSPITAL STAFF ALONG WITH MOTHER WHO HAD ARRIVED BY THIS
TIME!! THE WORKING DIAGNOSIS WAS "A BRAIN STEM STROKE" AND BY TUESDAY
EVENING WERE REALLY CONCERNED WITH THE QUALITY OF LIFE AND EVEN LIFE
ITSELF!
THIS IS WHERE THE FAMILY CAME TOGETHER ,I BELIEVE , TO WORK AS A TEAM, NOT
GIVING UP BUT PREPARING FOR THE WORST AND DOING EVERYTHING THEY COULD IN
THEIR STATE OF SHOCK! JAY AND MON CONTACTED ALL RELATIVES AND FRIENDS WHO
COULD BE REACHED BY E-MAIL! WENDY TAKING ON THE TUFF TASK OF TAKING CARE
OF MY PERSONAL BELONGINGS AND APT AS WELL AS, YES PICKING OUT CLOTHES FOR
A POSSIBLE FUNERAL! NOT FUN STUFF! GREG TAKING CARE OF MY JOB SITUATION
,IN FACT DOING MY JOB! LORI BEING @ MY SIDE AND KEEPING MY MORAL UP WITH
OTHER THINGS ALONG WITH FOOT MASSAGE! THEY WERE A TEAM "THE TEAM AS A
UNIT" AND WERE GOING TO DO EVERYTHING THEY COULD TO HELP ME SURVIVE THIS
THING!
THEN ONE OF THE E-MAILS CAME BACK AND RECOMMENDED THAT I BE TRANSFERRED TO
UNIVERSITY OF IOWA HOSPITALS AND CLINICS IN IOWA CITY RIGHT AWAY BY A
COUSIN I'LL CALL DR BERNIE! WELL AFTER SOME DISCUSSION WITH THE HOSPITAL
STAFF AND SOME SOUL SEARCHING [PLUS SOME PHONE CALLS] MOTHER AND JAY
TOGETHER MADE THE DECISION THAT THE FOLLOWING MORNING I WOULD BE FLOWN TO
IOWA CITY BY HELICOPTER!
---- ITS NOW WED
MORNING AND SURVIVOR 48 IS IN IOWA CITY @ UNIVERSITY OF IOWA HOSPITAL AND
CLINICS ONE OF THE FINEST HOSPITALS IN THE WORLD! THEY [THE DOCTORS] HAVE
DETERMINED THAT HE DID NOT HAVE A STROKE WHICH IS GOOD BUT THEY DO NOT
KNOW YET WHAT HAS LEFT HIM LARGELY PARALYZED AND UNABLE TO SPEAK OR BREATH
ON HIS OWN!! HE CANNOT OPEN HIS EYES BUT CAN SEE ACCORDING TO EARLY
TESTING! HIS HEARING IS FINE ACTUALLY IMPROVED WHICH IS ONE OF THE
CHARACTERISTICS OF GBS-MILLER FISHER!!
RIGHT NOW HIS MIND IS KIND OF TRAPPED INSIDE HIS BODY UNABLE TO
COMMUNICATE EXCEPT A FLICKER OF HIS LONGEST FINGER ON BOTH HANDS! THIS IS
HOW HE ANSWERS SIMPLE YES-NO QUESTIONS!
A HIGH SCHOOL CLASSMATE OF SURVIVOR 48 WORKS AT THE HOSPITAL AND HAS BEEN
VERY VERY HELPFUL! THEY HAVE A 1ST CLASS STAFF HERE AND ARE HOPEFUL
SOMETHING GOOD CAN COME OUT OF ALL THIS!!! HE REMAINS IN THE INTENSIVE
CARE UNIT! THURSDAY AUGUST 9, 2001! TOMORROW IS SURVIVOR 48 MOTHER'S
BIRTHDAY! WOW WHAT A PRESENT!
BY NOW HE IS GETTING LOTS OF CARDS AND E-MAILS WISHING A SPEEDY RECOVERY
AND BEST WISHES TO HIM AND HIS FAMILY FROM OTHER FAMILY MEMBERS AND
FRIENDS ! THE DOCTORS ARE HOPING THAT HE CAN REMAIN STABLE ENOUGH TO HAVE
A LUNG SCAN AND A LUMBAR OR SPINAL TAP TODAY ! THESE ARE OF COURSE
NECESSARY TO DETERMINE EXACTLY WHAT "48" HAS AND WHAT IS WRONG WITH HIM!!
IF YOU FIND A DEFINITION OF BOTULISM ON A WEBSITE FOR INSTANCE YOU WILL
SEE A PRETTY GOOD PICTURE OF THE SYMPTOMS! THEY HAVE SENT OFF FOR TEST FOR
THAT ,BUT DO NOT BELIEVE IT IS BECAUSE THERE PRIME SUSPECT AMONG OTHERS IS
RARE DISEASE CALLED " GUILLAIN BARRE' SYNDROME" (PRONOUNCED GIAN BARREY)
TO WITCH IS SYMPTOMS SEEM TO MATCH THAT ALSO!!
HE'S GETTING TREATMENT FOR THAT TOO AND STILL ON VENTILATOR AND CAN ONLY
MOVE A COUPLE OF FINGERS!! HE SEEMS A LITTLE WEAKER AND SLOWER TO RESPOND
BUT WAS ABLE TO ANSWER WITH HAND SQUEEZES THAT AUGUST 10TH IS MOM'S
BIRTHDAY AND NOT HIS SISTER OR BROTHER'S! EVERY LITTLE POSITIVE SIGN IS
GOOD @ THIS POINT AND FOR MANY MONTHS TO COME!! ---SYE-- THAT WAS ONE OF
THE BEST PRESENTS MOM COULD RECEIVE!!! IT IS AND WILL BE A EMOTIONAL
ROLLERCOASTER FROM NOW ON! THE FAMILY AND FRIENDS MUST REMAIN STRONG! THE
PATIENT CAN TELL ,SENSE , WHEN SOMETHING IS WRONG ! KEEP THINGS POSITIVE!
MY STORY CHAPTER
5 SURVIVOR 48- WELL SURVIVOR HAD TWO UNEVENTFUL NIGHTS AND RESULTS FROM
EYE TEST REVEALED NOTHING (WHICH IS GOOD) and plus they were able to do
lumbar TAP! THE FLUIDS WERE SENT OFF FOR TESTS! THEY ARE STILL THINKING
THAT IT IS GUILLAIN BARRE' SYNDROME [GBS]!!
EVEN IF COMPLETE RECOVERY IS POSSIBLE IT WILL TAKE QUITE AWHILE!!1HE NEEDS
TO KEEP WEATHERING THE DIFFICULTIES OF HIS PARALYZED STATE AND BEING
HOOKED UP TO A VENTILATOR!!
AS HIS GOOD BUDDY FROM THE NEW YORK YANKEES HAS BEEN KNOWN TO SAY "IT OVER
'TILL IT'S OVER"!!! AT THIS POINT YOU JUST CANT TELL BUT HE MAY BE IN TO
SEVERAL WEEKS OR MONTHS OF THIS PRECARIOUS SITUATION!!
AS FAMILY MEMBERS TRY TO BE HERE IN THE HOSPITAL AS MUCH AS POSSIBLE
,,THEY HAVE LIVES TO LIVE ALSO SO ITS GOOD TO SPLIT THE TIME ANYONE STAYS
@ THE HOSPITAL OR IN THE SAME CITY!1 (IF DIFFERENT)!! THIS WHOLE THING OF
A SERIOUS HEALTH PROBLEM IS VERY TOUGH ON ALL FAMILY MEMBERS WITH TRYING
TO BE SUPPORTIVE AND KEEP UP WITH THERE OBLIGATIONS AND JOBS!
SEVERAL DAYS AND LONG HOURS GO BY FOR ALL CONCERNED AND NOT MUCH CHANGE IN
48'S CONDITION! THIS IS A GOOD NEWS BAD NEWS SITUATION GOOD FROM A
PULMONARY STANDPOINT BUT BAD FROM A GBS STANDPOINT! WHILE HE IS BREATHING
BETTER AND NEEDS LESS OXYGEN AND PRESSURE FROM THE VENTILATOR HE DOES NOT
SEEM TO RESPONDING TO THE IVIG TREATMENTS FOR GBS!! STILL NOT POSITIVE HE
HAS GBS BUT IT APPEARS HE WILL BE HERE FOR A LONG TIME! THIS WILL INCREASE
THE CHANCES OF PULMONARY AND OTHER PROBLEMS ASSOCIATED WITH LYING ON
YOUR BACK FOR WEEKS AT A TIME!!! FOR NOW HE IS STABLE! FOR THOSE WITH A
MEDICAL BACKGROUND THE PROBLEM IN THE NERVES IS MORE AXONAL THAN MYELIN
SHEATHING! AS 48'S SISTER LORI SAYS "IT IS THE COPPER WIRE NOT THE PLASTIC
COVERING!" THIS IS A PROBABLY NOT A POSITIVE ASPECT!!!
48 REMAINED
FAIRLY STABLE FOR THE NEXT FEW DAYS AS FAR AS HIS RESPIRATORY CONDITION IS
CONCERNED!!! THE STAFF IS WORKING EVERYDAY TO KEEP HIS LUNGS AND SINUSES
FREE OF "STUFF" WHICH COULD INTERFERE WITH THE WORKING OF THE
VENTILATOR!!! THE NEUROLOGIST DECIDED TO GIVE MORE TREATMENTS OF "IVIG"
FOR THE "GBS" EVEN THOUGH THE INITIAL RESULTS WERE DISAPPOINTING!!! THIS
IS NOT DONE @ ALL HOSPITAL'S OR BY ALL DOCTORS!
48'S BROTHER ACTUALLY SAW HIM MOVE HIS EYES THIS MORNING WHEN HIS EYELIDS
WERE MANUALLY LIFTED! THIS IS NEW AND GOOD BUT WE NEED TO NOT MAKE TOO
MUCH OF ANY ONE THING !!! BOOKS THAT CAN BE READ ON THIS SUBJECT ARE "NO
LAUGHING MATTER" BY JOSEPH HELLER , THE AUTHOR OF "CATCH 22" WHO HAD GBS
IN 1982!!! ONE OTHER BOOK OF NOTE IS "BED 10"WITH UNKNOWN AUTHOR AT THIS
TIME! THE DATE IS AUGUST 16 2001 AND 48 IS LIKELY TO HAVE A
TRACHEOSTOMY TOMORROW! IT WILL BE BETTER TO HAVE THE BREATHING TUBE
THROUGH A HOLE IN HIS THROAT THAN IN HIS MOUTH!!! FOR SURE! THE FAMILY OF
48 UNDERSTANDS THERE IS NO LONG TERM PROBLEM WITH THIS AND IS MUCH BETTER
IN THE SHORT TERM!!!!
ITS FRIDAY AUG
18TH 2001 AND 48 HAS A SUCCESSFUL TRACHEOTOMY WHICH IS A VERY IMPORTANT
MINOR OPERATION! IT IS IMPORTANT FOR HIS HEALTH BOTH SHORT TERM AND LONG
TERM! HE NOW CAN BREATH THROUGH THE TUBE INSERTED IN HIS THROAT!! OH WHAT
A FEELING!!!! 48 FOR SOME UNKNOWN REASON [OTHER THAN THE INTENSE PAIN] IS
BECOMING A BIT LESS RESPONSIVE IN THE LAST FEW DAYS IN HIS ABILITY TO
ANSWER YES AND NO SIMPLE ANSWERS BY SQUEEZING HIS HANDS! HE CAN STILL DO
THESE THINGS IT JUST APPEARS HE MAY NOT BE DOING THEM AS ENERGETICALLY OR
AS OFTEN!!
NUTRITION REMAINS AN STRONG ISSUE BECAUSE HIS DIGESTIVE SYSTEM IS NOT
REALLY FUNCTIONING! IV HAS BEEN HIS ONLY WAY TO RECEIVE THEM!! HIS
BREATHING AND BLOOD RATE REMAIN GOOD! WE MAY HAVE TO EXPECT 2STEPS FORWARD
AND ONE STEP BACKWARD OR EVEN SIDEWAYS FOR AWHILE, BUT HOPE AND FAITH IS
STILL ALIVE!!
OK ITS MONDAY MORNING AND 48 HAS BEEN HOSPITALIZED FOR 2 LONG WEEKS NOW!
THE FAMILY OF 48 FEELS THAT EVERYDAY THAT GOES BY IS ONE LESS BAD ONE TO
WORRY ABOUT DESPITE THE FACT THAT THEY KNOW THERE WILL BE SOME MORE BAD
DAYS ALONG WITH SOME GOOD DAYS AHEAD!!
MOTHER AND BROTHER JAY HAVE BEEN HERE WITH 48 MOST OF THE TIME EITHER
SLEEPING IN SAME ROOM OR STAYING 48'S AUNT WHO HAPPENS TO LIVE IN SAME
TOWN AND OPENED UP HER HOME TO OUR WHOLE FAMILY!! THE OTHER BROTHER AND
SISTERS GREG, WENDY, AND LORI, HAVE BEEN HERE WHEN SCHEDULE PERMITS TO
SHOW SUPPORT WHICH IS VERY IMPORTANT! THEY HAVE BEEN SQUEEZING THERE
SCHEDULE'S PRETTY TIGHT ALSO! THEY ALSO, EACH TIME THEY COME, THEY PAY FOR
PARKING EXPENSES ! MOST OF 48'S NIECES AND NEPHEWS HAVE BEEN HERE AS WELL!
NEPHEW RYAN COMES EVERY WEEKEND TO GIVE 48 A UPDATED SPORTS REPORT! [ WAY
TO GO RYAN!]
HOPING FOR GOOD WEEK AND THANK YOU ALL FOR YOUR PRAYERS AND GOOD POSITIVE
THOUGHTS!
48 IS A BIG, I MEAN A HUGE FOOTBALL FAN, AND HIS FAVORITE TEAM IN THE NFL
IS OF COURSE THE GREEN BAY PACKERS! THE PACKERS WERE GOING TO PLAY AN
EXHIBITION GAME WITH BROTHER GREG'S FAVORITE TEAM AND GREG WAS WISHING THE
PACKERS WIN TONIGHT!! GO PACK! PACKERS RULE!
ITS 8/22/01 TODAY
AND THE GBS STATUS OF SURVIVOR 48 HAS NOT CHANGED MUCH AND HIS CONDITION
IN MEDICAL TERMS REMAINS STABLE IN RESPECT TO HIS BREATHING ON A
VENTILATOR! HOWEVER 48 HAS BEEN FIGHTING A HIGH FEVER FOR SEVERAL DAYS!
THE CAUSE IS UNCERTAIN BUT MAY BE SINUS RELATED! HIS GASTROINTESTINAL
SYSTEM REMAINS LARGELY DOMANT WHICH AFFECTS THE AMOUNT OF NUTRITION HE CAN
GET! THERE IS REALLY NO GOOD NEWS RIGHT NOW ALL N ALL TO REPORT
48 HAD AN IMPORTANT VISITOR FROM WATERLOO FROM FRIEND AND FELLOW PACKER
BACKER, RUSSEL HINZE! [GOOD TIMING RUSS] IN AS MUCH AS THE PACKERS AND ITS
MANY MANY MILLIONS OF LOYAL FANS ARE 48'S 2ND FAMILY WE KNOW THAT 48
REALLY APPRECIATED, DESPITE HIS HIGH FEVER, RUSS'S VISIT!
 IN THAT SAME THOUGHT, RUSS HAD HELPED
48 FULFILL A CHILDHOOD DREAM OF ACTUALLY STEPPING FOOT IN THE HALLOWED
GROUNDS OF LAMBEAU FIELD IN THE LAST FEW YEARS!
[ALSO BROTHER JAY ON 48'S 40TH
BIRTHDAY GOT HIM TO YANKEE STADIUM ANOTHER HALLOWED GROUND AND LIFETIME
DREAM OF 48'S! 48 APPRECIATED BOTH PILGRIMAGES MORE THAN WORDS CAN SAY AND
HE WAS TURNED BACK INTO A CHILD LIKE WONDERMENT LIKE DREAM WHEN HE ENTERED
BOTH HALLOW STADIUMS!]
48 CONTINUES TO HAVE A FEVER AS HIGH AS 104 BUT MORE RECENTLY AROUND 100!
IT IS STILL TOO EARLY TO TELL WEATHER THE UNDERLYING PROBLEM, WHICH IS
BELIEVED TO BE SINUS RELATED HAS BEEN ADDRESSED!?! IF FOUND NOT TO BE THE
PROBLEM MORE AGGRESSIVE MEASURES MAY HAVE TO BE TAKEN SUCH AS TO DRAIN THE
SINUS CAVITY ITSELF!
48'S HEMOGLOBIN LEVEL WERE DOWN DUE TO POOR NUTRITION AND VERY FREQUENT
TAKING OF BLOOD TEST USUALLY VERY EARLY IN THE MORNING!
 HE ALSO HAS BLOCKAGE OF THE
GASTROINTESTINAL SYSTEM [ILEUS, NOT SURE ON SPELLING] SO NO BOWL MOVEMENT
YET!
48 HAD A EMG , ELECTOMYLOGRAM, TO TEST HIS NERVE CONDITION OR SENSORY
PERSCEPTION! HIS RESPONSES ARE LESS SO THE POLYNEUROPATHY[PROBABLY GBS IS
ACTUALLY GETTING WORSE!
THAT'S A LOT OF BAD NEWS FOR ONE DAY BUT THAT'S HOW IT GOES IN ICU
[INTENSIVE CARE UNIT] ACTUALLY! SURVIVOR 48 FACES A TOUGH NEW BATTLE
EVERYDAY BUT SO FAR 48 AND HIS TEAM OF FAMILY, FRIENDS AND DOCTORS HAVE
MET EVERY CHALLENGE HEAD-ON AND WE EXPECT THAT TO CONTINUE!!
THE DOCTORS, FAMILY AND FRIENDS ARE CONFIDENT THAT 48 WILL GET BETTER WE
JUST DO NOT KNOW HOW MANY MORE NASTY DAYS HE WILL HAVE TO GO THROUGH AND
ENDURE ALONG THE LONG ROAD TO RECOVERY!
AS YOU MAY KNOW THESE CHAPTERS SO FAR HAVE BEEN MOSTLY FROM NOTES OF
FAMILY MEMBERS AT THE TIME THEY WERE HAPPENING AND VERY MUCH APPRECIATED
BUT RIGHT NOW A FEW WORDS FROM ME PERSONALLY!
AT THIS TIME, I, 48, WOULD LIKE TO GIVE OUT SOME HOPEFUL ADVISE OR
SUGGESTIONS TO NEW GBS PATIENT IN SAME CONDITION AS 48: MAKE SURE THE
BLANKETS ARE NOT UNCOMFORTABLE TO YOUR LOVED ONE AS HOSPITAL BLANKETS
,HECK ANY BLANKET, ON THIS PATIENT FEELS LIKE A TON OF BRICKS! ASK IF THEY
HAVE DRY MOUTH AND KEEP IT WET!
ALSO IF @ ALL POSSIBLE PLEASE HAVE SOMEONE STAY @ HOSPITAL THRU THE NIGHT
SLEEPING IN ROOM IF POSSIBLE OR IN LOUNGE AS THIS COULD BE VERY HELPFUL TO
PATIENT!, IF THAT IS IMPOSSIBLE TALK TO 3RD SHIFT STAFF AND LET THEM KNOW
YOU CARE AND HAVE THEM JUST CHECK TWICE AS OFTEN AS USUAL ON YOUR LOVED
ONE! IN OTHER WORDS LET THEM KNOW YOU CARE AND THEN THEY WILL CARE MORE!
[THIS IS IN NO WAY A KNOCK ON 3RD SHIFT STAFF IT'S JUST AN ADDED HELPFUL
HINT!]
48 DID HAVE A GOOD DAY IN TERMS OF RESPONDING TO QUESTIONS AND COMMANDS TO
MOVE SOMETHING! ALSO HE WAS ABLE TO WORK OUT SOME WITH PHYSICAL THERAPIST
IN BED FOR THE 1ST TIME!
HOW DOES THAT SAYING GO? 'ONE SMALL STEP FOR MAN ONE LARGE STEP FOR 48!"
WITH A TWIST BY
SURVIVOR 48 FROM HIS NIECE KARA! EVERYONE PLEASE WELCOME KARA!
KARA WRITES "I AWOKE TO THE SOUND OF MY OLDER BROTHER'S [RYAN] VOICE!
HE WAS TALKING TO MY MOTHER! [WENDY] AS HER VOICE BEGAN TO SHAKE I KNEW
SOMETHING WAS TERRIBLY WRONG! AS I TRIED TO THINK OF WHAT IT COULD
POSSIBLY BE, MY MOTHER RUSHED INTO THE ROOM THAT WAS GOING TO POSSIBLY
CHANGE MY FAMILY'S LIFE FOR THE NEXT YEAR ,AND POSSIBLY FOR THE REST OF MY
UNCLE'S LIFE!!!
MY MOTHERS BROTHER , MY UNCLE, WAS IN THE HOSPITAL FIGHTING FOR HIS LIFE
WITH A DISEASE CALLED GUILLAIN BARRE' SYNDROME! GBS IS A DISEASE OF THE
PERIPHERAL NERVOUS SYSTEM. IT REQUIRED MY UNCLE TO BE ON A RESPIRATOR FOR
MONTHS AND HAVE A TRACHEOTOMY, WHICH LEFT HIM UNABLE TO SPEAK! HE WAS
LITERALLY TRAPPED IN HIS OWN BODY!
THE ONLY COMMUNICATION MY UNCLE COULD MAKE WAS BY A SMALL MOVEMENT IN HIS
FINGER! AS MY UNCLE WAS FIGHTING WITH ALL THESE MEDICAL PROBLEMS, HE WAS
ALSO FACING THE LOSS OF HIS JOB, HOME, AND A YEAR OR MORE OF HIS LIFE!
MY UNCLE WAS NEVER ALONE IN THIS BATTLE OF HIS LIFE! THIS WOULD PROVE TO
BE VERY IMPORTANT, AS HE HAD THE SUPPORT AND LOVE OF HIS MOTHER ,
BROTHERS, SISTERS, NIECES 'S, NEPHEWS, FRIENDS, AND HIS EXTENDED FAMILY TO
HELP HIM THROUGH THIS LIFE THREATENING DISEASE!
MY GRANDMOTHER BECAME HIS NUMBER ONE CARE GIVER! SHE HAD TO MAKE ALL THE
MAJOR MEDICAL DECISIONS AND CONSENT TO THE TEST THAT HAD TO BE TAKEN! IT
WAS ALL VERY SCARY AND EMOTIONAL FOR HER AS SHE KEPT ASKING HERSELF" WILL
I MAKE THE RIGHT DECISION?" OR HOW WILL THE TEST TURN OUT?" FORTUNATELY
SHE WAS NEVER LEFT ENTIRELY ALONE TO DECIDE ALL THESE IMPORTANT DECISIONS!
MY OTHER UNCLE [JAY] WAS IN A PLACE IN HIS LIFE WHERE HE WAS ABLE TO STAY
AT THE HOSPITAL WITH 48 NIGHT AND DAY! UNCLE JAY, TEMPORARILY KISSED HIS
WIFE GOOD BYE , PUT HIS LIFE ON HOLD, AND FOR THE NEXT SEVERAL MONTHS SAT
BY (SURVIVOR 48) HIS BROTHER'S BEDSIDE!!!
HEY KARA DID SUCH A GOOD JOB IM GOING TO ASK HER TO STICK AROUND AND WRITE
CHAPTER 11!!!
THANKS , MY STORY WITH A TWIST!
UNCLE JAY WAS
KEEPING BOTH 48 IN FORMED ON THE HAPPENING ON THE OUTSIDE WORLD, AND
KEEPING THE OUTSIDE WORLD OF FRIENDS AND FAMILY UPDATED ON 48'S PROGRESS
AND SETBACKS!
-------UNCLE GREG, 48'S OLDEST BROTHER AND WHO 48 WORKED FOR WAS TRYING TO
FIND TIME TO VISIT 48 IN HOSPITAL DO HIS FULL TIME JOB AND ACTUALLY
PHYSICALLY DO 48'S JOB ALSO NOT KNOWING WEATHER HE WOULD BE OK OR NOT!
--------WENDY , 48'S YOUNGER SISTER AND MY MOM WAS WITH HIM DURING THOSE
1ST FEW HOURS OF THE DISEASE WATCHING HELPLESSLY AS THIS DISEASE WAS
TAKING OVER HIS ENTIRE BODY! BEFORE THE 1ST NIGHT WAS OVER MOM HAD TO CALL
HER MOTHER, SISTER AND 2 BROTHERS AND TELL THEM THE SAD NEWS THAT 48 HAD
GONE INTO CARDIAC ARREST AND WAS SUFFERING FROM RESPIRATORY FAILURE AND
POSSIBLE BRAIN DAMAGE! DURING THIS TIME AND THE MONTHS AHEAD MOM WAS
TRYING TO BE HERE FOR HER BROTHER AND WORKING A FULL TIME JOB ALONG WITH
GOING TO NURSES SCHOOL!!! WOW, WOW!
----------AUNT LORI, 48'S YOUNGEST SISTER , A TEACHER, WAS STILL ON SUMMER
VACATION FROM SCHOOL! SHE SPENT MANY MANY HOURS OF BEING AN EXTRA PHYSICAL
THERAPIST AND TRYING TO EXERCISE HIS BODY, LIMBS INCLUDED! LORI, MOM ,AND
OTHERS HELPED TO PACK UP 48 BELONGINGS AND MOVE HIM OUT FROM HIS ABANDONED
APARTMENT!!!
-----------AS YOU MAY OR MAY NOT KNOW ,48, IS ONE OF THE MOST DEDICATED
GREEN BAY PACKER FAN I HAVE EVER SEEN!
HIS PACKER FRIEND RUSS CAME TO VISIT AND TO KEEP HIM INFORMED OF THE
PACKER NEWS ! WHEN HE COULD NOT MAKE IT IN PERSON HE WOULD CALL!
-----------48'S COUSIN BERNIE WHO LIVES JUST OUTSIDE CHICAGO CAME TO VISIT
48 IN IOWA CITY FOR A HANDS ON OBSERVATION OF 48' CONDITION! HE ALSO
ANSWERED SEVERAL OF OUR FAMILY'S QUESTIONS! I THINK HE WAS A GREAT SYMBOL
OF ALL THE LOVE AND SUPPORT THE EXTENDED FAMILY HAS FOR 48!!
------------48 HAD A FRIEND FROM OKLAHOMA WHO CALLED REGULARLY TO VISIT
WITH 48 ,EVEN THOUGH HE COULD NOT SPEAK BACK EXCEPT WITH A SLIGHT SMILE!!!
-------------REFLECTING BACK ON THOSE 1ST SCARY DAYS I REMEMBER ONE DOCTOR
TELLING THE WHOLE FAMILY ABOUT A VERY IMPORTANT MEDICINE THAT WOULD HELP
48 MORE THAN ANYTHING!! THE LOVE AND SUPPORT OF HIS FAMILY WOULD BE KEY TO
HIS FULL RECOVERY! FROM THAT POINT ON EVERYONE THAT LOVED 48 AND TOOK A
ROLE AND OR TASK THAT WAS NEEDED TO BE DONE FOR HIM!
--------------WHILE MY GRANDMOTHER STAYED STRONG AND POSITIVE AND PRAYED
FOR A SPEEDY RECOVERY WITH WORDS OF ENCOURAGEMENT FROM HI BEDSIDE! GREG
HANDLED TO JOB AND INSURANCE PAPERWORK! WITH JAY KEEPING OUTSIDE FAMILY
AND FRIENDS IN FORMED OF 48'S CONDITION WITH HIS E-MAIL'S!! WENDY
TOOK CHARGE OF HIS PERSONAL AFFAIRS WHILE LORI BECAME HIS MOTHERS MAIN
SUPPORT!! THE FAMILY BECAME A TEAM [ THE TEAM AS A UNIT] AND THEIR MAIN
GOAL WAS TO HAVE THEIR SON BROTHER, AND UNCLE + FRIEND HEALTHY AND HOME
AGAIN!!!
---------WOW LETS GIVE KARA A STANDING OVATION FOR HER WORK HERE !!I DO
NOT KNOW IF I COULD DO BETTER MYSELF!
----------THANKS KARA FOR HELPING ME OUT WITH CHAPTER 10,AND 11!
"I am the friend of Survivor 48's from Oklahoma. We met in a trivia room
and became instant competitors. We both soon learned we shared an interest
in sports and he turned me onto the Green Bay Packers and I turned him on
to the seven-time National champions, Oklahoma Sooners!
It was a shock to learn he had become ill on that hot August night. August
6 is my grandfathers birthday, and although he has passed on, I also
remember his birthday. I was reminiscing about him when I received a
strange e-mail from Survivor 48. He seemed distraught and I was helpless
as to what to do. I called his mom and she told me just how seriously ill
he was. Little did I know, he would spend months in the hospital and hover
close to death on many occasions.
I am thankful to his family for their special care to 48. Not only did
they meet all his needs, they found the time to keep his friends informed
on an almost daily basis through calls and e-mails. I was given a
telephone number to his room and called on many occasions. Although he
would not respond, they assured me he could hear my voice and occasionally
gave me a smile or a hand squeeze. It was actually nice getting to talk to
48 without being interrupted with one of his "doofus" or "your it"
comments!
I was amazed at his will to want to get well again. The day he was
actually able to call and talk was indeed a miracle. To know he is up and
about and enjoying the things that are close to his heart only
demonstrates his determination to live life to the fullest.
During all of his darkest days, I was consumed with awe at the closeness
of his family. They rallied as the "team" that 48 talks about in almost
every chapter. What a gift they are to each other.
Having battled colon cancer, I am quite aware of how important family and
friend's are in ones recovery. Survivor 48 happened to come into my life
at the time I was diagnosed with cancer and he was an integral part of my
recovery. I could count on a daily e-mail or e-card to cheer me on days I
really needed it. Little did I know that he would need that same support
just a short time later. He was given that same support he so generously
gave me. I am not sure I could ever be the friend and supporter that he
was to me, but I prayed for him daily and hoped I was instrumental in some
small way to aid his recovery.
I am sure his family can attest to the effects of love and faith during
times such as 48 experienced. I admire all of you so much. Live life to
the fullest, 48, and OK...one last time...GO PACKERS!!! (AND SOONERS)
Okie"
WELL BACK TO MY
OWN WRITING WELL THAT WAS A NICE BREAK!
I HOPE EVERYONE ENJOYED THOSE THREE CHAPTERS, TWO BY MY NIECE KARA AND ONE
BY MY FRIEND FROM OKLAHOMA!!!
ANY STANDING OVATIONS LEFT OUT THERE!
---------OK BACK TO MY STORY! FEVER WAS DOWN AROUND 100 WHICH IS LOW
ENOUGH THAT THE TOP NOTCH STAFF DOES NOT CONCERN ITSELF TO THAT, HOWEVER
TODAY IT IS UP TO OVER 101!! THE CAUSE OF THE HIGHER TEMPERATURE IS NOT
HIS SINUS, AT LEAST NOT ANYMORE, BECAUSE HE GOT A CLEAN BILL OF HEALTH ON
THAT!! JUST THE THOUGHT OF CLEANING ONES SINUSES IS WORSE THAN SCRATCHING
ON CHALKBOARD-WELL MUCH WORSE!!,,BUT IF YOU HAVE THE RIGHT PROFESSIONAL
DOING IT, IT CAN BE DONE NEAR PAINLESS AS POSSIBLE!!! ALTHOUGH THE
FAMILY AND FRIENDS MAY NOT WANT TO WATCH CAUSE IT GETS REAL GROSS!!
------------48'S HEMOGLOBIN IS UP TODAY ,AND HIS BODY MUST BE DOING THAT
ON ITS OWN BECAUSE HE DID NOT HAVE TO BE GIVEN ANY BLOOD FOR THAT!! THIS
IS A GOOD SMALL STEP AND AT THIS TIME WE ARE THANKFUL FOR ANY SMALL STEPS
THAT ARE NOT BAD STEPS!!!
------------THIS IS AUGUST 25TH NOW, AND ANY STATUS QUO IS OKIE DOKIE WITH
US!!!! AUG 26TH IS TODAY AND WE HAVE GOOD NEWS AND BAD NEWS! 1ST THE BAD-
48 HAS A BLOOD CLOT IN HIS ARM FROM THE CENTRAL OR PIC LINE THAT HAS BEEN
USED TO GIVE HIM NUTRITION AND MEDICINE! THEY ARE ATTEMPTING TO BREAK UP
THE CLOT WITH MORE BLOOD THINNER AND WILL HAVE TO REMOVE THE LINE AND FIND
A SOMEPLACE ELSE TO PLACE IT ON HIS BODY!! THE PROBLEM IS THERE HAS, FROM
DAY ONE BEEN A CONTINUAL PROBLEM OF FINDING GOOD VEINS AND ARTERIES FOR
THIS AND TO DRAW BLOOD FOR VARIOUS TEST!!
------------48'S TEMPERATURE HAS RISEN UP TO 102 AND NOT SURE OF THE CAUSE
BUT MAY BE THE CLOT!!! HE ALSO HAS APPEARS TO HAVE SOME REDUCTION IN
KIDNEY FUNCTIONS!!! LAB TEST PENDING!! STILL NO ACTION IN THE
GASTROINTESTINAL ALTHOUGH SOME SOUND CONTINUE TO EMANATE!
------------HE MAY HAVE PNEUMONIA IN ONE LUNG BUT GENERALLY HIS LUNGS HAVE
BEEN CLEAR FOR THE MOST PART FOR QUITE A FEW DAYS!!
------------GENERALLY , HIS BREATHING ON THE VENTILATOR AND ALL THE FACETS
OF THIS HAS BEEN STABLE FOR OVER A WEEK!!!
THIS WAS A MAJOR PROBLEM AND CONCERN THE 1ST WEEK!!!
HIS BLOOD PRESSURE IS GENERALLY GOOD!!
-------------FROM A NEUROLOGICAL STANDPOINT , 48 APPEARS TO BE ABLE TO
MOVE MORE!! HE CAN MOVE HIS HANDS, FINGERS AND THUMBS SOMEWHAT ALONG WITH
HIS FOOT AND TOES SOME!! HE CAN MOVE HIS EYES BUT NOT HIS EYELIDS
[CLOSED].
HE APPEARS TO BE ABLE TO MOVE HIS MOUTH [OH OH!] TONGUE AND LIPS ON
COMMAND!, BUT NEED TO SEE THIS CONTINUE TO BE SURE!! THE CHIEF NEUROLOGIST
GAVE HIM 2 THUMBS UP THIS MORNING AND SAID IT WAS THE MOST MOVEMENT IN TWO
WEEKS!!!!! WHILE THIS IS GREAT NEWS WE MUST TREAT DEVELOPMENTS LIKE
INDIVIDUAL GAMES DURING A LONG BASEBALL SEASON!! NOT TOO UP WHEN 48 WINS
AND NOT TOO DOWN WHEN 48 LOSES!! ITS A LONG LONG SEASON!!!
---------THE
SITUATION AS STATED AT THE END OF CHAPTER 15 WAS SO DYNAMIC SINCE SATURDAY
NIGHT ITS BEEN HARD TO SEND UPDATES AS WE ALL HAVE BEEN OVERTAKEN BY
EVENTS BEFORE I COULD GET A NOTE OUT!
----------1ST VERY SPECIAL THANKS SHOULD GO OUT TO 48'S COUSIN [ NOT AUNT]
MARSHA AND HUSBAND TIM , WHO HAVE OPENED THEIR HOME UP TO OUT ENTIRE
FAMILY AVAILABLE IN IOWA CITY WHERE UNIVERSITY OF IOWA HOSPITAL AND
CLINICS ARE LOCATED! MOTHER HAS BEEN ABLE TO SLEEP, AND MORE IMPORTANTLY ,
REST THERE MOST NIGHTS AS HAVE OTHER FAMILY MEMBERS!
---------48 HAD A EPISODE SATURDAY NIGHT IN WHICH HIS BLOOD PRESSURE
DROPPED PRECIPITOUSLY !ONE CONCERN WAS A PERFORATED BOWL BUT THAT WAS NOT
IT!
-----------THIS WAS TREATED WITH MEDICATIONS AND NOW SEEMS TO BE BACK TO
WHERE IT SHOULD BE! HE IS NO LONGER RECEIVING THE MEDICATION! HE
LATER HAD A BIG DROP IN HIS HEART RATE -- VENTRICULAR TACHYCARDIA, BUT HE
REBOUNDED FROM THAT ON HIS OWN !! SURVIVOR 48 REMAINED COOL AS A CUCUMBER
AND RESPONSIVE WHILE THE REST OF US REMAINED LESS SO!!
------------DUE TO LOW HEMOGLOBIN HE RECEIVED TWO UNITS OF BLOOD FROM HIS
YOUNGEST SISTER LORI AND TYPE WAS A- !!
HE HAS HAD FEVERS ON AND OFF ! THE INFECTIOUS DISEASE PERSONNEL HAVE NOT
BEEN ABLE TO IDENTIFIED A CAUSE!! THE ENT FOLKS ARE CERTAIN IT IS NOT THE
SINUSES THOUGH YOU WOULD NOT KNOW IT BY THE STUFF THEY EXTRACTED FROM THE
NOSE!!
-------------HIS "GI" SYSTEM CONTINUES TO MAKE NOISES, BUT NO ACTION!,,[
NO RUDE COMMENTS NOW PLEASE]! HIS DIGESTIVE TRACK NEEDS TO GET GOING SO HE
CAN BE FED BY TUBE AND NOT "IV" . ULTRASOUND OF HIS ABDOMEN SHOWED NO
ABNORMALITIES!
--------------BREATHING IS GOOD WITH NO REAL SIGN OF PNEUMONIA !!!,,WHICH
OF COURSE IS GOOD NEWS ANYTIME!
--------------HE HAS EARLY SIGNS OF REDUCTION IN KIDNEY FUNCTION ! THIS
MAY BE CAUSED BY ONE OR MORE OF THE VARIOUS MEDICATION HE RECEIVES! THE
RENAL TEAM IS MONITORING HOPING IT WILL BE REVERSIBLE!!!
--------------A CLOT DEVELOPED IN THE AREA OF HIS OWN MAIN "IV" IN HIS
RIGHT ARM WHICH EXTENDED UP TO HIS SHOULDER AREA! THEY ARE NOW RELYING ON
A LINE IN HIS FEMORAL ARTERY WHICH IS NOT A LONG TERM GOOD SOLUTION AND
PULLED THE ARM LINE! THEY HAVE BEEN TRYING TO BREAK UP THE BLOOD CLOT WITH
BLOOD THINNER WHICH COULD MEAN SEVERAL SHOTS IN THE STOMACH EACH DAY! THEY
WERE GOING TO GET A GOOD LOOK AT THE BLOOD CLOT BUT THE DYE THAT WOULD BE
USED IN THE" VINOGRAM" TO SHOW THE CONTRAST IS NOT SO GOOD FOR THE
KIDNEYS! THEY HAD 48 READY TO GO DO A "MAGNETIC RESONANCE" OF THE VASCULAR
SYSTEM , BUT THAT WAS POSTPONED LAST NIGHT UNTIL LATER TODAY!
-------SURVIVOR 48 DID LISTEN TO A BIT OF MONDAY NIGHT FOOTBALL FROM
MEXICO CITY BUT THE VAQUEROS PUT HIM TO SLEEP!!
-----THANKS AGAIN FOR POWERFUL VIBES !
------WE HAVE
SOME WORKING EXPLANATIONS OF THE MANY DEVELOPMENTS THAT DEVELOPED OVER THE
WEEKEND!! ITS AUG 29,2001!
-------PERHAPS AS A RESULT OF THE EFFECT OF THE BLOOD THINNER [HEPARIN]
[GIVEN TO DEAL WITH THE CLOT IN THE ARM RESULTING FROM THE "IV"], AN OLD
INJURY OR DAMAGED VESSELS , A SCAT SCAN REVEALED THERE WAS SOME INTERNAL
BLEEDING IN 48'S HIP OR BUTTOCKS AREA. THIS PROBABLY CAUSED THE DIP IN
BLOOD PRESSURE SINCE WE REMEMBER IT WAS NOT THE PERFORATED BOWL, WHICH IN
TURN COULD BE A CAUSE OF THE REDUCTION IN KIDNEY FUNCTION OR ALSO FROM ONE
OR MORE OF THE THE MANY MEDICATION 48 IS ON RIGHT NOW! HE HAS BEEN TAKEN
THE BLOOD THINNER, HEPARIN, THE BLEEDING HAS STOPPED AND HIS MEDICATIONS
HAVE BEEN ALTERED .WE WILL HAVE TO WAIT AND SEE ON THE KIDNEY FUNCTION!!
ON THE PLUS SIDE URINE OUTPUT IS GOOD , BUT THE KIDNEY WAS FOUND TO BE NOT
PERFORMING AT PEAK EFFICIENCY AS FAR AS ITS CLEANING FUNCTION!
---------- A MAGNETIC RESONANCE OF THE VASCULAR SYSTEM SHOWED THE CLOT WAS
NOT IN THE DEEP VEINS WHICH IS GOOD! HE IS NOW OFF THE BLOOD THINNER , WE
BELIEVE THE CLOT IN THE ARM , HOPEFULLY WILL BREAK UP WITHOUT FURTHER
INTERVENTION! WE WILL SEE!
-----------TEMP IS DOWN THIS MORNING AS WAS HIS HEMOGLOBIN AND HE WILL BE
RECEIVING BLOOD!
---------- THE CONSENSUS WITH THE GI PROBLEM AT THIS TIME IS THAT THE
NERVES AND MUSCLES THAT OPERATE THIS SYSTEM HAS BEEN EFFECTED TOO MUCH BY
"GUILLAIN BARRE'" WHICH WILL HAVE TO IN PROVE BEFORE 48 WILL BE ABLE TO BE
FED BY ANY WAY OTHER THAN "IV" !
-----------TODAY OR TOMORROW 48 IS LIKELY TO RECEIVE A "TUNNELED CATHETER"
WHICH WILL BE USED FOR FOOD AND MEDICINE DELIVERY . IT IS SUPPOSE TO BE A
SYSTEM THAT IS LESS SUSCEPTIBLE TO INFECTION!
-----------PACKER FRIEND AND FELLOW HAWKEYE FAN RUSS HINZE FROM CEDAR
FALLS CAME FOR A LATE EVENING VISIT AND TO GIVE AND GET AN UPDATE ! I WAS
NOT ABLE TO UNDERSTAND MUCH OF WHAT WAS SAID BUT GATHERED FROM 48 AND HIS
GOOD BUDDY THAT "PACKERS RULE" !!!!!! ENOUGH SAID!
------------PERHAPS NOW 48 WILL HAVE A COUPLE OF UNEVENTFUL DAYS IN WHICH
HE CAN GET SOME REST AND GATHER STRENGTH TO TAKE ON HIS MAIN OPPONENT ,
THE "GBS"!
-------ONE OF THE
REASONS I GET INTO SUCH MEDICAL DETAIL IS WE HAVE SEVERAL MEDICAL
PROFESSIONALS HERE WH0 ACTUALLY UNDERSTAND WHAT I AM WRITING , EVEN IF I
DO NOT, AND WE GET SOME GREAT FEEDBACK FROM THEM FROM TIME TO TIME!!! OK
ON WITH THE STORY!
---------48 HAS A DISTENDED COLON, BUT THERE DOES NOT SEEM TO BE ANY
DANGER AT THE MOMENT!! THERE IS SOME STOOL IN THE COLON AFTER 3 WEEKS! THE
GAS THAT IS IN THERE IS LOCATED ON THE LEFT SIDE WHICH MAKES IT CLOSER TO
THE "OUT" AND THIS IS GOOD! HOPEFULLY IT IS MOVING IN THAT
DIRECTION!,,[OUT] 48 HAS NOT HAD A VOWEL MOVEMENT YET! THERE ARE SEVERAL
REASONS FOR THIS: 1. LACK OF MOVEMENT BY 48, 2.PAIN MEDICATIONS.3.THE GBS
ITSELF! GBS HAS OF COURSE DONE THE SAME THING TO 48'S OTHER MUSCLES AND
NERVES! [RESTRICTED MOVEMENT OR STOPPED IT COMPLETELY!] THERE ARE STOMACH
SOUNDS WHICH SHOW SOME EFFORT , BUT THEY BUT THEY HAVE NOT BEEN EFFECTIVE
YET!
-------48 IS RECEIVING BLOOD BECAUSE HIS HEMOGLOBIN HAS BEEN DOWN! THIS
STILL APPEARS TO BE THE RESULT OF SOME INTERNAL BLEEDING WE DISCUSSED
YESTERDAY!! THE RESULTS OF THAT AND THE LATEST SCAT SCAN ALONG WITH
ABDOMEN ARE ALL PENDING!
---------BY THE WAY ITS AUGUST 30TH AND ITS SISTER LORI, HIS YOUNGEST,
BIRTHDAY! HAPPY BIRTHDAY TO YOU LORI!
---------SURVIVOR 48 HAS MOVED SOME FACIAL MUSCLES IN AN ATTEMPT TO OPEN
HIS EYES AND/OR BLINK! HE HAS ALSO BEEN SEEN MOVING HIS WHOLE HEAD A
LITTLE BIT! THESE ARE LITTLE VICTORIES ! HE DOES THESE THINGS WHEN HE IS
TRYING TO DO SOMETHING ELSE WHICH IS INDICATIVE OF THE PROBLEM , BUT NONE
THE LESS REPRESENT PROGRESS !! THE NEUROLOGY TEAM HAS SOMETHING TO HAPPY
ABOUT AS DO WE, BUT AS MENTIONED BEFORE ITS A LONG SEASON!! LETS HOPE THIS
IS JUST THE BEGINNING OF NEUROLOGICAL PROGRESS!
---------48'S CHIEF NEUROLOGIST , LIKE 48'S BROTHER N LAW ,MIKE LEO, IS A
VIKING FAN, BUT THE FACT THAT THEY DO NOT KNOW NOTHING ABOUT FOOTBALL DOES
NOT MAKE EITHER ONE OF THEM BAD PERSONS!,,,LOL
----------MOTHER WAS ABLE TO GO HOME TO OELWEIN WEDNESDAY NIGHT AND RETURN
FRIDAY TO IOWA CITY! SHE WAS ABLE TO CELEBRATE LORI'S BIRTHDAY AND SLEEP
IN HER OWN BED!
------------1ST SOME UNFINISHED
PERSONAL BUSINESS IF I MIGHT!
TO DEBI ; I SAW AND READ YOUR REMARKS AND THEY WERE NOT FUNNY, LOL,, FOR
ALL YOU NY YANKEE FANS OUT THEIR OR BASEBALL FANS IN GENERAL , AND I KNOW
THEIR ARE MILLIONS OF YOU, MY YOUNGEST SISTER YOU WAS HAVING A BIRTHDAY
THROUGH THIS TIME AND WAS BORN DURING THE SUMMER OF YANKEE HISTORY WHEN
THE FAMOUS M&M BOYS WERE HAVING THEIR HOMERUN CHASE OF THE GREAT BABE
RUTH!-OK ON WITH MY STORY---------------------------------------
------------CHAPTER 19--SURVIVOR 48 HAD NO BAD NEWS TODAY AS HIS
NEUROLOGIST, DR HENRY ADAMS, STATED THAT IN TERMS OF HIS ABILITY TO MOVE
VARIOUS MUSCLES 48 WAS STILL WHERE HE WAS 2-3 WEEKS AGO. THAT IS GOOD EVEN
THOUGH NO PROGRESS WAS MADE BECAUSE, BEFORE THAT PERIOD 48 WAS GETTING
WORSE SINCE BEFORE ANY OF US EXCEPT 48 EVEN KNEW ABOUT IT! WE ARE NOT SURE
WHEN IT BEGAN, BUT IT HAS BEEN GETTING WORSE SINCE AUGUST 5TH!
-----------WHEN ASKED TO OPEN HIS EYES , WE COULD SEE THE MUSCLES BELOW
THE EYES MOVE A BIT AND IF ASKED TO SMILE, HE CAN GIVE US A SNICKER, WHICH
HE HAS BEEN WORKING ON FOR OTHER PURPOSES EVER SINCE! [LOL] HE ALSO WAS
ABLE TO WIGGLE HIS LEFT ARM A LITTLE WHEN WORKING WITH HIS PHYSICAL
THERAPIST! THAT IS CERTAINLY GOOD NEWS , BUT WE ARE TAKING IT ONE DAY AT A
TIME!,,,,I REMEMBER AN OLD SAYING I HEARD THAT APPLIES HERE I THINK, "NO
ONE EVER CLIMBED MT . EVEREST BY RUNNING!"
-------------HIS KIDNEY FUNCTION HAS APPARENTLY STABILIZED. THE LEVELS OF
CERTAIN ELEMENTS WHICH INDICATE DYSFUNCTION HAD PLATEAUED ! IF I
UNDERSTOOD CORRECTLY, THE DAMAGE WAS LIKELY CAUSED BY THE PASSAGE OF SOME
DAMAGED TISSUE THROUGH THE KIDNEY.
-----------48 SHOULD AND WILL UNDERGO SOME MORE SURGERY TO IMPLACE A NEW
"IV" SYSTEM- A TUNNELED CATHETER OR "HICKMAN" AS THEY ARE SOMETIMES
CALLED, WHICH SHOULD BE LESS SUSCEPTIBLE TO INFECTION WHICH IS ALWAYS A
BIG CONCERN, AND AMENDABLE TO REMAINING IN PLACE FOR A LONGER PERIOD OF
TIME! EVEN THOUGH THAT MAY NOT SOUND GOOD, WE ALL KNOW WERE IN THIS FOR
THE LONG HAUL NOW!
----------IF 48 CAN REMAIN STABLE NEXT WEEK HE MIGHT BE MOVED FROM MEDICAL
"ICU" TO THE INTERMEDIATE PULMONARY UNIT! {"PULMONARY MEANING OR HAVING TO
DO WITH THE LUNGS, I BELIEVE!"} THAT UNIT HAPPENS TO BE FULL RIGHT NOW BUT
48 HAS BEEN PLACED ON WAITING LIST! WHILE MOVING OUT OF "MICU", [ MEDICAL
INTENSIVE CARE UNIT"] IS PROGRESS WE ALMOST HATE TO LEAVE THE SECURITY AND
TRUST OF THE TOP NOTCH STAFF@ MICU!
-----------"MOVIN ON UP TO A DELUX APT IN THE SKY, YEP WE'RE MOVIN ON UP "
------------ON SATURDAY ,AUGUST 31ST 2001 ABOUT 1PM 48 WAS TRANSFERRED
FROM MEDICAL INTENSIVE CARE UNIT {MICU} TO THE INTERMEDIATE PULMONARY UNIT
WHICH MEANS HE WILL NEED LESS CARE! IT IS LOCATED ON THE 5TH FLOOR AS WELL
BUT DIFFERENT ELEVATOR #1!! BAY 4 R00M 8 FOR THE RECORD!!
------------WELL THAT ,WHAT CHAPTER 19 WOW SOME GOOD NEWS FOR A CHANGE BUT
NOT OUT OF WOODS AT ALL YET!!!
------------SOME TIME THROUGH THIS PERIOD I WAS HAVING TERRIBLE NIGHTMARES
AND WAS REALLY BECOMING PARANOID AT EVERYTHING! MORE ON THAT LATER--
THESE CHAPTERS ARE GETTING HARDER AND HARDER TO WRITE AS SOME MEMORIES
KEEP COMING BACK, BOTH GOOD AND BAD SO BEAR WITH ME OK! THANKS SURVIVOR 48
--------THIS 1ST PART OF THIS
CHAPTER IS WRITTEN MOSTLY BY MY LITTLE YOUNGEST SISTER, LORI FROM HER
NOTES AT THE TIME!
--------IN TALKING TO DR. JESS MANDEL HE REPORTS :LUNGS SOUND GREAT BUT
WANTS MORE MOVEMENT AND BE ABLE TO COMMUNICATE MORE BEFORE TAKING 48 OFF
THE RESPIRATOR FOR TRIAL PERIODS! NO GI ACTION VOWEL MOVEMENT AND THAT IS
THE NEXT GOAL! {NO SHIT AND YOU CAN TAKE THAT EITHER WAY}!!!
---------48 HAD A QUIET NIGHT BUT HAD SOME PAIN IN HIS RIGHT LEG FROM
PHYSICAL THERAPY HE DID TODAY!! TEMPERATURE IS NORMAL! HE CAN MOVE HIS
HEAD FROM SIDE TO SIDE BUT IT IS NOTICEABLE! HE CAN SAY NO WITH HIS HEAD
BUT NOT YES YET AND CHOSE TO SAY NO IN THAT MODE SEVERAL TIMES TO ME!
---------HIS WRIST ROTATED ONCE REAL WELL FOR ME WHEN I WAS HOLDING IT BUT
HE WAS UNABLE TO REPEAT THIS FEAT FOR RHONDA , HIS PHYSICAL THERAPIST! SHE
CAME FOR SPECIAL TRIP TO SEE THIS AND WAS DISAPPOINTED NOT TO BE ABLE TO!
----------RUSS CAME BY AGAIN TONIGHT! IT WAS THE 1ST TIME I HAD MET HIM
AND WAS VERY IMPRESSED WITH WHAT A NICE GUY HE IS AND WHAT A GOOD FRIEND
OF 48'S! HE ALSO SAID HE WOULD TAPE ALL PACKER GAMES FOR 48 AS HE HAD A
SISTER LIVING IN WISCONSIN WHO COULD TAPE ANY GAMES HE COULD NOT!!!
----------THE BED THE NURSING STAFF SET UP FOR ME WAS QUITE COMFORTABLE
AND THE STAFF WAS VERY FRIENDLY AND ASKED SEVERAL TIMES IF I NEEDED
ANYTHING!! I GOT UP ONLY TWICE THROUGHOUT THE WHOLE NIGHT AS ONCE A MED
DRIP WAS BEEPING AND ONCE 48 WOULD NOT ANSWER A PAIN QUESTION BUT HE DID
FOR ME! OTHERWISE A CALM NIGHT AND I SLEPT WELL!! TALK TO YOU LATER
LORI--48'S YOUNGEST SISTER!!!
-------THANKS LORI!-
 I LOVE
YOU!-------------------------------
-------- BROTHER JAY IS BACK ON LINE AFTER SPENDING MOST OF LABOR DAY
WEEKEND IN OELWEIN!----------------------------------
---------AS REPORTED FRIDAY , 48 MOVED FROM INTENSIVE CARE UNIT TO
INTERMEDIATE PULMONARY CARE UNIT WHICH IS ALSO ON THE 5TH FLOOR OF THE
UNIVERSITY OF IOWA HOSPITALS!
---------48 IS DOING BETTER! HE IS INITIATING HIS OWN BREATHING AS HIS
BREATHING NERVES AND MUSCLES ARE WORKING ! THEY ARE NOT WORKING AT FULL
CAPACITY AS HE STILL NEEDS AND IS DEPENDENT ON THE VENTILATOR TO INSURE
THAT HE GETS ENOUGH AIR WITH EACH BREATH HE TAKES ! [ AND IS THANKFUL FOR
EVERYONE OF THEM TO THIS DAY] ONE GOAL IS TO WEAN HIM ENTIRELY FROM THE
VENTILATOR!! OTHERWISE KNOWN AS "THE MACHINE!"
THE GREAT STAFF HERE IS ALSO DISCUSSING WITH US ON TAKING MEASURES TO GET
HIM TO TALK ! [ I KNOW SOME OF YOU ARE SAYING "DON'T DO IT" } HE HAS AN
ANNOYING HOSE IN HIS MOUTH AND HE STILL HAS THE "TRACH TUBE" SO
ADJUSTMENTS WILL HAVE TO BE MADE SOON! I BELIEVE THAT HE WOULD NOT BE ABLE
TO TALK WITH THOSE TWO ITEMS EVEN IF HIS NERVES AND MUSCLES HAVE IMPROVED
TO THE POINT THAT HE WOULD OTHERWISE BE ABLE TO DO SO! I ALSO BELIEVE HE
WILL NEED A "VALVE" TO COVER THE WHOLE IN HIS THROAT WHERE THE TRACH TUBE
IS!
-----------HE CAN MOVE MORE MUSCLES AND INCLUDING HIS HEAD BACK AND FORTH
AS IF TO SAY NO ! HE HAS INCREASINGLY FACIAL MUSCLE MOVEMENT AND MORE AND
STRONGER HAND, WRIST AND ARM MOVEMENT! THESE ARE ALL SMALL IMPROVEMENTS
AND ARE ALL SMALL STEPS BUT SEEM TO BE MORE CONSISTENT! THEY ARE ALSO MORE
NOTICEABLE WHEN ONE HAS BEEN AWAY FRO A FEW DAYS!
----------HE STILL DOES NOT HAVE AN ACTIVE GASTROINTESTINAL SYSTEM AND
THAT WILL HAVE TO GET GOING BEFORE HE CAN BE FED OTHER THAN BY "IV" ! HE
SEEMS TO BE LESS DISTENDED OR BLOATED AND HIS STOMACH IS MUCH SOFTER!
[STOP THE GIGGLING LADIES] HE MAY BE RELEASING GASSES , BUT BASED ON HIS
ALLEGED HISTORY WE WOULD THINK THERE WOULD BE NO DOUBT AND A NO BRAINER AS
TO THAT IF INDEED HE WAS!!!!!,,,
-------WELL THAT IS CHAPTER 20 OF MY STORY SURVIVOR 48
--------SEPT 6,2001, A THURSDAY,
-----------------------------------------
----------NOT MUCH NEW TO REPORT TODAY WHICH IS GOOD! BASICALLY WE JUST
HAVE WAIT FOR THE GUILLAIN BARRE' SYNDROME TO RECEDE BIT BY BIT SO THAT
HIS BREATHING AND OTHER BODILY FUNCTIONS AND MUSCLE STRENGTH RETURN! THE
RESPIRATORY THERAPISTS TRIED ON TUESDAY TO TAKE 48 OFF THE VENTILATOR, BUT
WHILE HE IS ABLE TO INITIATE BREATHING , HE DOES NOT HAVE ENOUGH STRENGTH
TO BREATH AS DEEPLY AS NECESSARY TO SUSTAIN HIM ON HIS OWN! HE SEEMS TO BE
ACCEPTING SOME OF THE LIQUID NUTRIENTS THAT HE IS BEING FED TO HIM THROUGH
A TUBE IN HIS MOUTH. SOME HAS TO BE EXTRACTED BECAUSE IT IS JUST SITTING
THERE BUT THE REST SEEMS TO BE MOVING THROUGH THE GI SYSTEM FOR THE FIRST
TIME. NO BOWEL MOVEMENT YET BUT THERE SEEMS TO BE SOME GAS EMISSIONS.
----------MOTHER LEFT FOR OELWEIN WEDNESDAY AFTERNOON AND WILL RETURN TO
IOWA CITY ON FRIDAY AFTERNOON! I WILL THEN SPEND THE WEEKEND AND RETURN TO
IOWA CITY ON MONDAY. SLOW IMPROVEMENT AND LACK OF MEDICAL CRISIS MAY BE
THE NORM FOR A WHILE! WE MUST BE PATIENT! [NO PUN INTENDED]
---------SEPTEMBER 20TH TUESDAY NOW AS 48 IMPROVES SLOWLY WITH INCREASING
ABILITY TO MOVE BODY PARTS ! 48 CONTINUES TO BE FED THROUGH A TUBE IN HIS
MOUTH! HE NOW HAS HAD 2 BOWEL MOVEMENTS , HIS FIRST SINCE BEING
HOSPITALIZATION OVER 5 WEEKS AGO! OUT OF RESPECT FOR 48'S PRIVACY I WILL
SAY NO MORE, HOWEVER WE ALL NEW HE HAD IT IN HIM! [OK IF YOU STOP LAUGHING
LONG ENOUGH I WILL GO ON!]
----------HE REMAINS UNABLE TO BREATH WITHOUT THE VENTILATOR , BUT HE IS
TESTED WITHOUT IT FROM TIME TO TIME!
HIS SPIRITS SEEM GOOD DESPITE ALL THAT HE HAS GONE THROUGH AND THEY WERE
RAISED EVEN HIGHER WHEN LONG TIME FAMILY FRIEND ,DICK PETRICK, WAS NICE
ENOUGH TO SIT 48'S ROOM SUNDAY DURING THE PACKER -LION SO 48 COULD "REALLY
" ENJOY THE PACKER VICTORY OVER MR. PETRICK'S DETROIT LIONS!! [PACKERS
RULE]
48 STILL CANNOT OPEN HIS EYES OR SPEAK. HE HAS TRIED TO MOVE HIS LIPS TO
TRY AND TELL US THINGS BUT USUALLY IS UNABLE TO COMMUNICATE WHAT HE WANTS
AS THIS NORMAL HUMAN FUNCTION WILL HAVE TO WAIT FOR SOMETIME DOWN THE
ROAD!! [QUICK NOTE MOTHER AND I ARE TRADING OFF TIME BETWEEN THE HOSPITAL
WITH 48 AND BEING HOME IN OELWEIN TENDING TO THINGS THERE AND REFUELING
OURSELVES!]
----------GOING BACK TO EARLIER IN SEPTEMBER
2001--------------------------OUR COUNTRY HAS BEEN HIT BY WHAT HAS BECOME
KNOWN AS 9-11 AND 48 HAS BEEN HAVING TERRIBLE NIGHTMARES SCREAMING OUT AT
NIGHT TO ANYONE WOULD NOTICE AS OF COURSE HE HAS NO VOICE BACK YET!! A FEW
OF THE NIGHTMARES DESCRIPTIONS FOLLOW HERE AS BEST BE REMEMBERED! ONE WAS
NOT SO BAD SO I WILL START OUT WITH IT..48 DREAMED HE AND THE LEGENDARY
COACH HAYDEN FRY WERE SOMEHOW PARTNERS OF A 7-11 GROCERY STORE IN A PRIME
LOCATION IN IOWA CITY NEAR THE HOSPITAL WITH 48 LEAVING ON WEEKENDS TO
VISIT FRIEND FROM OKLAHOMA IN OKLAHOMA AND MANAGING TO SOMEHOW GET BACK ON
MONDAY MORNING LIKE A WEEKEND PASS! DON'T ASK HOW A DISABLED AND PARALYZED
MAN COULD TRAVEL OVER A 500 MILES WITHOUT A VEHICLE OR A PLANE TICKET
BECAUSE I CANT EXPLAIN IT EITHER! OH AND ON THESE TRIPS 48 NEVER ACTUALLY
MET HIS FRIEND IN PERSON BUT KEPT GETTING CLOSER AND CLOSER TO THE MISSION
BECOMING COMPLETING IT BUT NEVER MADE IT ALL THE WAY! BUT HE AND HAYDEN
FRY [RETIRED FORMER GREAT IOWA COACHING LEGEND OF THE IOWA HAWKEYES] HAD A
SUCCESSFUL BUSINESS PARTNERSHIP AS 48 WOULD WORK MONDAY THRU FRIDAY AND
HAYDEN WOULD MAKE GUEST APPEARANCES ON WEEKENDS WITH 48 MEETING WITH
HAYDEN ON THE 15TH OF EVERY MONTH TO GO OVER PROGRESS!
-------------THEN THERE WAS THE DREAM AROUND 9-11 AS 48 SEEN EXTRA
SECURITY AROUND HIM HE BECAME PARANOID AND AS HE DID NOT KNOW WHAT REALLY
HAPPEN HE INVENTED HIS OWN VERSION! HIS COUSIN MARSHA WHO LIVES IN IOWA
CITY WAS INVENTED TO BE HEAD OF SECURITY AT THE HOSPITALS AND WOULD HAVE
THE RESPONSIBILITY OF KEEPING ALL PATIENTS SAFE!,,,WELL ONE DAY SHE
DECIDED TO COME AND MAKE ROUNDS AND SEE WHAT WAS GOING ON ! WELL THEN
THERE WAS THIS HELICOPTER BRINGING IN PATIENTS AND SHE DECIDED WITH MY
HELP NO DOUBT THAT I WANTED A RIDE IN THE HELICOPTER SO I AND MY WHOLE
FAMILY AND NIECES AND NEPHEWS TOOK A SHORT RIDE UP AND DOWN A FLOOR OF THE
HOSPITAL! WOW REAL SAFE UH! OK ENOUGH FOR NOW!
-----------THANKS THAT IS CHAPTER 21 MY STORY SURVIVOR 48
-------------MY STORY CHAPTER 22
SURVIVOR48
-------------WE ARE NOW JUMPING AHEAD A BIT TO SEPT 18TH 2001! 48 CONTINUE
TO IMPROVES SLOWLY! AS AN EXAMPLE OF THIS 48 BEGAN TO OPEN HIS EYES
YESTERDAY LOOKING AROUND MORE AND MORE TODAY! THIS HAS TO BE SO REASSURING
TO HIM AND WHEN ASKED ON A SCALE OF 1-10 HOW WELL HE COULD SEE HE SAID ,
EXCUSE ME INDICATED 5! HE CAN SEE OBJECTS MOVING AROUND HIM WHO HE THINKS
ARE PEOPLE BUT COULD NOT SEE HIS FAVORITE BASEBALL TEAM FROM ST. LOUIS
PLAYING ON THE TV IN HIS ROOM!
EXTRA EXTRA! READ ALL ABOUT IT ! BIG NEWS HERE! 48'S FAVORITE NFL
FOOTBALL TEAM THE 13 TIME WORLD CHAMPIONS THE GREEN BAY PACKERS HAVE SENT
48 A GET WELL CARD AND SIGNED BY #94 KABEER GBAJA-BIAMILLA WHO PLAYS
DEFENSIVE END! MAY ALLAH BLESS THIS AMERICAN MUSLIM FOR HIS KIND
WORDS!
-----HE ALSO RECEIVED A STUFFED FOOTBALL WITH THE PACKER EMBLEM FROM
FRIENDS DICK AND ANNIE! IT ALSO SERVES AS A MEDICAL PURPOSE AS HE
STRETCHES OUT HIS FINGERS IN A WAY TO EXERCISE HIS FINGERS AS WELL AS THE
MORALE SUPPORT! THANKS TO ALL!
------48 CONTINUES TO HAVE PROBLEMS WITH DIGESTION! THAT IS PROBABLY THE
MOST PROBLEMATIC @ THIS TIME! HE CONTINUES TO BE FED BY TUBE-- THE ONE IN
HIS MOUTH WAS JUST REPLACED WITH ONE IN HIS NOSE TO GIVE HIS THROAT A
BREAK WHICH HE REALLY APPRECIATED BUT THOUGHT IT CAME TOO LATE!
---------IT WAS DURING THIS TIME THAT 48 HAD MORE NIGHTMARES AND NOT GOOD
ONES EITHER BELIEVED TO BE FROM THE MEDICINE MORPHINE! HE DREAMED THAT HIS
NIECE KARA WAS IN A SEPARATE ROOM WITH THOSE MIME PEOPLE WHO I AM NOT
FAMILIAR WITH OTHER THAN SEEING THEM ONCE BEFORE I GOT SICK, I GUESS! BUT
IT WAS REALLY HARD TO SEE MY NIECE UP IN AQUARIUM LIKE STAGE DOING THESE
ODD MOVEMENTS IN SAND AND THE SAND GETTING LESS AND LESS!
THE OTHER DREAM OR NIGHTMARE I HAD WAS THE SHEETS AND BED THAT WAS MOVING
KEPT GETTING CLOSER AND CLOSER TO WRAPPING MY LEGS UP AND CRUSHING THEM
AND EVERYONE THAT CAME IN TO MY ROOM SEEMED TO IGNORE THE FACT THAT I WAS
IN DEEP DEEP FEAR FOR MY LIFE! THAT WAS THE MEDICAL STAFF AND FAMILY
MEMBERS!
-------ONE MORE DREAM CAME RIGHT AFTER 9-11 TRAGEDY ALTHOUGH I WAS NOT
TOLD A THING ABOUT IT ,,I COULD HEAR SOME THINGS AND FEEL SOMETHING WAS
DIFFERENT THROUGH OUT THE HOSPITAL! WELL MY COUSIN, MARSHA WHO LIVES IN
IOWA CITY AND I ALWAYS HAVE LOOKED UP TO AND ADMIRED EVEN AS A LITTLE KID
GROWING UP! I SEEMED TO CALL HER MARSHALL INSTEAD OF MARSHA[ MUST OF BEEN
ONE OF THOSE COWBOY AND INDIAN PHASES] AND SO IN MY NIGHTMARE STATE OF
MIND I MADE HER HEAD OF SECURITY FOR THE WHOLE HOSPITAL WITH SPECIAL
ASSIGNMENT BEING WHERE I WAS! SO AS SECURITY WAS BEEFED UP IN THE REAL
WORLD IT WAS IN MY NIGHTMARES TOO ! WELL MARSHALL MARSHA HAD A SUSPECT
TRAPPED TO A CORNER OF THE BIG HOSPITAL I WAS IN AND SHE CORNERED HIM DOWN
TO UNDER MY BED AND THIS TOOK HOURS TO GET THAT FAR! IT SEEM TO DRAG ON
AND ON AND WAS ALWAYS DONE IN SHADOWS !! THEN IT HAPPENED AS MY BROTHER
JAY AND MOM WERE DECOYS MARSHALL MARSHA DID HER THING AND NAILED THE GUY
JUST AS I WOKE UP FROM THIS SCARY DREAM AND HE WAS GOING TO ATTACK ME!
WOW!
--- ENOUGH OF THAT FOR A WHILE! 48 CONTINUES TO BE ABLE TO MOVE MORE BODY
PARTS OR MOVE THEM MORE THAN BEFORE! BUT THIS IS DONE SLOWLY AND WITHOUT
ANY PATTERN!
HOPEFULLY THIS WILL SOON INCLUDE IMPROVEMENT IN HIS DIGESTIVE SYSTEM AND
BREATHING! GETTING 48 EATING AND BREATHING ARE THE IMMEDIATE CONCERNS AND
GOALS!
-----NOT MUCH CHANGE ON WED SEP 19, 2001! 48 SEEMS TO HAVE MUCH MORE
DIFFICULTY BEING COMFORTABLE THAN IN THE RECENT PAST! [THAT IS I BELIEVE
AS THE MUSCLES BECOME UNPARALYZED THE NERVES TAKE OVER AND DISH OUT THE
PAIN!]
HE HAS NOT BEEN KEEPING HIS EYES OPEN AS MUCH EVEN THOUGH WE ARE SURE HE
STILL CAN! [ THE BRIGHT LIGHTS SEEM TO BOTHER HIM MORE AND MORE!] I ,JAY ,
WAS DISCUSSING CHARITABLE WAYS UNDERWAY TO HELP THE VICTIMS AND THERE
FAMILIES OF 911 AND AS A RESULT DESPITE HIS OWN CONDITION, BOTH MEDICALLY
AND FINANCIAL, 48 INDICATED THAT HE WANTED AND INSISTED ON MAKING A
DONATION TO THE RED CROSS! WE WILL SEND A CHECK FOR HIM IN THE NEXT FEW
DAYS! I GUESS 48 WE CAN TAKE A HINT TOO AND GIVE SOME TOO!
OK THAT'S CHAPTER 22 FROM SURVIVOR 48 --HAVE A GREAT DAY--
---------------------MY STORY
SURVIVOR48 CHAPTER 23----------------
------SATURDAY SEPTEMBER 22,2001! I GUESS THE MOST IMPORTANT NEWS IS THAT
48 IS IN A GREAT DEAL OF PAIN AS HIS NERVES REGENERATE! [DA AS ALL GBS'ERS
KNOW] WHILE THIS IS GOOD AND UNFORTUNATELY NECESSARY , FOR COMPLETE
RECOVERY AND MARKS IMPROVEMENT, IT IS A VERY DIFFICULT TIME FOR 48!!!!
-------NOW THAT 48 CAN OPEN HIS EYES A LITTLE AND MOVE HIS FACIAL MUSCLES
HE CAN EXPRESS HIS PAIN AND SADNESS MORE AND MORE!! THIS IS TOUGH AND
FRUSTRATING TO ALL CONCERNED ,48, FAMILY AND CAREGIVERS!
-------MOTHER AND I HAVE KIND OF A ROUTINE! SHE PARTIES IN OELWEIN ALL
WEEK WITH FRIENDS , THEN I COME HOME TO DO CHORES AROUND THE HOUSE ALL
WEEKEND!! [LOL] THIS IS LIKELY TO CONTINUE UNTIL 48 CAN SPEAK WHICH MEANS
UNTIL HE GETS OFF RESPIRATOR! AT THAT TIME WE WONT NEED A FAMILY MOUTH
PIECE TO ASSIST WITH HIS PROPER CARE! NO PREDICTION WHEN THAT WILL BE!
-------THE E-MAIL LIST THAT I SEND OUT CONTINUES TO GROW AND WE THANK YOU
FOR YOUR CONTINUED SUPPORT AND PRAYERS! GOD BLESS AMERICA! GOD BLESS THE
USA!!!!
-------- ITS NOW FRIDAY SEPTEMBER 28TH,2001! I HAVE NOT SENT OUT A MESSAGE
IN AWHILE BECAUSE THINGS ARE NOT AS HECTIC NOW AS BEFORE AS THERE DOES NOT
SEEM TO BE AS MUCH NEW NEWS! 48 IS IMPROVING OVERALL, BUT VERY SLOWLY! I
AM NOT SURE HE HAS ANY MORE MOVEMENT THIS WEEK AS IF HE DOES IT IS HARD TO
NOTE WHEN YOUR HERE FOR MORE THAN A SHORT PERIOD OF TIME! VISITORS WHO
HAVE NOT SEEN HIM FOR AWHILE REALLY CAN TELL AND NOTE THE DIFFERENCE!!
--------HE CAN OPEN HIS EYES , BUT CANNOT SEE REAL WELL. HE IS REAL GOOD
AT ROLLING HIS EYES, [A FAMILY TRAIT] WHEN HE THINKS A STUPID QUESTION OR
GUESS HAS BEEN MADE! HIS VISION IS NOT WELL ENOUGH EVEN TO WATCH TV TO
GIVE YOU AN EXAMPLE! HE HAS COMPLAINED OF BREATHING PROBLEMS AND IN FACT
HE HAS SOME LUNG CONGESTION THAT THE STAFF JUMPED ON WITH MORE CHEST
PERCUSSION AND A BROCHIALOSCOPY [S] [?] A CAMERA AIDED VACUUMING OF HIS
LUNGS! [THAT DON'T SOUND LIKE FUN NOW DOES IT!] HE HAS ALSO COMPLAINED OF
HEARING OR LACK THERE OF AS IT SEEMS TO COME AND GO! HE SEEMS TO BE
COMPLAINING LESS AND LESS ABOUT THE TERRIBLE THROBBING BURNING PAIN HE
EXPRESSED EARLIER WHEN WE THOUGHT HIS ARMS AND LEGS NERVES REGENERATING
THE NERVES!
---------NO TIME TABLE HAS BEEN GIVEN FO 48 TO BE COMING OFF THE
VENTILATOR [THE MACHINE] THAT FOLLOWS HIM EVERYWHERE LIKE A SHADOW! HE IS
HOPING TO EVENTUALLY BE GETTING OUT OF THE INTERMEDIATE PULMONARY CARE
UNIT, OUT OF UNIVERSITY OF IOWA HOSPITAL AND CLINICS AND INTO SOME IN
PATIENT PHYSICAL THERAPY REHABILITATION PROGRAM CLOSER TO HOME! HOPEFULLY,
TO HELP ON PROGRESS AND HELP ON ALL PHASES OF FAMILY AND FRIENDS TO BE
MUCH CLOSER TO HOME, PERHAPS IN WATERLOO! THERE HAS BEEN LOTS OF TRIPS TO
IOWA CITY AND WATERLOO WOULD BE MUCH CLOSER! HOMECOMING FOOTBALL GAME AT
THE UNIVERSITY OF IOWA, ON SATURDAY, ALONG WITH THE PACKERS TO TRY TO SEE
AND HEAR ON SUNDAY TO VICTORY!!! GO PACK GO!
------I NEED MORE FEEDBACK ON HOW I AM DOING WRITING THIS!
THE SPELLING SEEMS TO BE A QUESTION MARK AS I HAVE NEVER BEEN A GREAT
SPELLER BUT AS LUCK WOULD HAVE IT THERE IS NO SPELL CHECK ON THIS SITE, SO
IM DOING THE BEST I CAN! THE LENGTH HAS BEEN BROUGHT UP OF THESE CHAPTERS!
WELL FOLKS I JUST TYPE UNTIL IM TIRED OR REACH A POINT I FEEL I NEED TO
STOP! BUT THANKS FOR THE GOOD SUGGESTIONS!
--------DO YOU WANT MORE NIGHTMARE STORIES?,,,,
----WELL HERE IS ONE MORE TO END THIS CHAPTER WITH! THERE SEEMED TO BE A
PATIENT THAT DID NOT SURVIVE AND THE RUMOR MILL ON HOW IT HAPPEN WAS NOT
GOOD! ONE STORY HAD IT THAT HE WAS SO FRUSTRATED THAT HE HUNG HIMSELF WITH
THE TWISTED SHEETS THAT GET WRAPPED UP IN THE MOVING BED! [FROM SIDE TO
SIDE] ANOTHER ONE HAD HIM GETTING THROWN INTO A DUMPSTER BY A DISGRUNTLED
EMPLOYEE AND YET ANOTHER RUMOR WAS THAT HE WAS TAKEN OUT BY A SECOND
TERRORIST!,,,,,WOW, GLAD I WOKE UP, EVEN IF IT WAS IN SWEAT!!!
---------BYE FOR NOW THAT'S CHAPTER 23,,,PLEASE IF YOU READ THIS GIVE A
FEEDBACK IF YOU CAN! @
brett_fan_4ever@msn.com
--thanks
MY STORY CHAPTER
24 SURVIVOR48
--------EXTRA EXTRA READ ALL ABOUT IT!!! HOT OFF THE PRESS!!
48 IS DOING FINE ,ESPECIALLY SINCE HE JUST HAD A VISIT FROM IOWA
BASKETBALL STAR LUKE RECKER!!! IOWA BASKETBALL TRAINER BOUGHT HIM OVER !
LUKE WAS GRACIOUS ENOUGH TO SIGN AN AUTOGRAPH AND HE AND THE TRAINER
PROMISED TO SEND SOMETHING ELSE MORE OFFICIAL LATER WHICH TURNED OUT TO BE
A HAT!! LUKE OFFERED WORDS OF ENCOURAGEMENT TO 48!!
----------WHEN ASKED 48 TO THINK OF A CERTAIN FORMER INDIANA BASKETBALL
COACH, HE MADE A TERRIBLE LOOKING FACE THAT MUST OF TOOK ALL HIS FACIAL
MUSCLES!!! LUKE TOLD HIM HE AGREED AND TOLD 48 THAT HE COULD TELL 48 SOME
WILD STORIES ABOUT HIS FORMER COACH!!!
----------48 HAD JUST HAD A GREAT VISIT FROM ONE OF UNIVERSITY OF IOWA 'S
FOOTBALL PLAYER AARON KAMPMAN [NOW A GREENBAY PACKER!] WHO WAS DEFENSIVE
END AND A DARN GOOD ONE TOO! HE LEFT 48 WITH SEVERAL AUTOGRAPH ITEMS!!
THESE VISITS TOOK PLACE ABOUT THE SAME TIME AS 48 RECEIVED A CARD FROM THE
GREEN BAY PACKER ORGANIZATION SIGNED BY DEFENSIVE END KABEER GBAJA
-BIAMILA THE PRESENT AND FUTURE DEFENSIVE END!!
----------48 JUST MISSED ANOTHER BIG SPORTS FIGURE, WHO WAS ON ANOTHER
FLOOR IN AUGUST, AS HEAD COACH BOBBY STOOPS OF THE UNIVERSITY OF OKLAHOMA
SOONERS AND FORMER ASSISTANT COACH FOR THE UNIVERSITY OF IOWA HAWKEYE'S
UNDER THE LEGENDARY COACH HAYDEN FRY!! HE WAS
-HERE AS HIS DAUGHTER WAS HERE FOR SURGERY!!!!
-------ITS REALLY NICE OF THESE SPORTS FIGURES TO TAKE TIME TO GIVE
ENCOURAGEMENT AND HOPE AND TO VISIT PATIENTS LIKE 48!!
---------ITS NOW OCTOBER 3, 2001 AND MEDICALLY THERE IS NOT MUCH NEW TO
REPORT AS 48 CONTINUES TO IMPROVE SLOWLY BUT HE CANNOT MOVE MUCH YET!! HIS
EYES AND MOUTH MOVE NOW, BUT ALTHOUGH 48 THINKS HE IS MOUTHING WORDS OUT
TO THE BEST OF HIS ABILITY WE CANNOT USUALLY MAKE OUT WHAT 48 IS TRYING TO
SAY AND IT DOES GET FRUSTRATING FOR ALL, AS READING LIPS IS STILL NEXT TO
IMPOSSIBLE!!
---------OCTOBER 18,2001 THURSDAY! I WAS ABLE TO SPEND SOME TIME WITH MY
LOVELY WIFE FOR THE 1ST TIME SINCE AUGUST 1ST! WE MET FOR 5 DAYS IN VEGAS!
THE TRIP WAS WONDERFUL AND THE FOUNTAINS OF BELLAGIO WERE THE SECOND MOST
BEAUTIFUL SIGHT THERE!
-----MOTHER AND I ARE NOT TAKING TURNS STAYING WITH 48 24/7 ANYMORE AS HE
IN FACT HAD HIS 1ST DAY WITHOUT FAMILY ON TUESDAY! ONE DAY WHILE I WAS
GONE 48 WAS TAKEN FOR A SMALL TRIP IN THE HOSPITAL TO GO SEE A PEP RALLY
FOR THE FOOTBALL TEAM WITH THE PEP SQUAD AND CHEERLEADERS DOING THEIR
THING FOR PATIENTS OF THE HOSPITAL! THEY WERE KIND ENOUGH TO TAKE SOME
PICTURES WITH 48 WHICH 48 WAS QUOTED AS SAYING LATER MADE "THIS A VERY
GOOD DAY!"
-------HE WAS TRANSFERRED TO A MOBILE CHAIR AND TAKEN OUT FOR ANOTHER TRIP
WHILE I WAS HERE WHICH INCLUDED GOING TO SEE OLD FRIENDS AT MICU WHERE HE
SPENT MOST OF AUGUST!! HE ALSO MADE IT TO THE PATIO ON ANOTHER FLOOR, BUT
UNFORTUNATELY IT WAS NOT AN "INDIAN" SUMMER DAY SO HE DID NOT STAY LONG
OUT ON PORCH!
BUT THIS IS ONLY THE BEGINNING!!
-------ONE AFTERNOON WHILE HE AND I WERE WATCHING THE BEGINNING OF THE
YANKEE-MARINER BASEBALL GAME [GO YANKS!], THE RESPIRATOR THERAPIST WAS
HANGING AROUND LONGER THAN USUAL [WE AT 1ST JUST THOUGHT SHE WAS A YANKEE
FAN TOO] NOT DOING MUCH AND BOTH OF US NOTICED!!
AFTER A LONG WHILE SHE TOLD 48 THAT CONGRATULATIONS WERE IN ORDER BECAUSE
SHE HAD TURNED DOWN THE SETTINGS [PRETTY SNEAKY] ON THE" MACHINE" AND HE
WAS NOW FOR THE 1ST TIME WAS TAKING BREATHS ON HIS OWN!!!!! THE" MACHINE"
WAS SET @8 AND HE WAS BREATHING 14-16 FOR ABOUT A HALF AN HOUR OR SO
BEFORE SHE TURNED IT BACK!!!!!!!!!!!!!!!!!!!!! THIS IS VERY SIGNIFICANT
BECAUSE IT SEEMS IT HAS BEEN OVER TEN [10] WEEKS SINCE HE HAD BREATHED ON
HIS OWN!!!!!! 48 AS HE SHOULD OF BEEN WAS QUITE PLEASED WITH HIMSELF!! HE
ASKED THAT I WRITE THE MILESTONE DOWN ON THE NEW PACKER CALENDAR FROM THE
FRONT OFFICE WHO SENT IT!! I TOLD HIM THAT I WOULD RITE DOWN THAT HE WAS
BUSTED AND HIS DAYS OF FAKING IT WERE OVER , BUT INSTEAD WROTE THAT 48 HAD
INITIATED HIS OWN BREATHS AND WAS OVER BREATHING THE MACHINE!!!!!!!!!!!!!!
-----ON OTHER SMALLER MATTERS 48 IS STILL BE FED VIA A TUBE THROUGH HIS
MOUTH AND CANNOT SPEAK YET ALTHOUGH HE CONTINUES TO MOUTH WORDS THAT ONLY
SELDOM CAN BE UNDERSTOOD!..[ONE MORE NOTE...... EVER SINCE THE 1ST DAY OF
THIS ORDEAL 48 HAS HAD A SMALL STUFFED ANIMAL BY HIS SIDE FOR HIM TO FEEL
AND HANG ONTO WHICH HIS BROTHER BOUGHT FOR HIM AND HE STILL HAS TO THIS
DAY WHICH WE CALL "HERKY"] OK THAT'S CHAPTER 24! MY STORY SURVIVOR48!!
-------THANKS FOR LISTENING!!
---------HELLO
--------------------------------
--------CHAPTER 25 MY STORY SURVIVOR48----NOV 8TH
2001-------------------------
-------LOTS OF GOOD NEWS TODAY FOR SURVIVOR48!!!!--------------
--------48 RECEIVED A FABULOUS TREASURED GIFT, MAILED FROM THE 13 TIME
WORLD CHAMPIONSHIP TEAM, THE GREEN BAY PACKERS!!
IT WAS AN OFFICIALLY LICENSE NFL FOOTBALL AND SIGNED BY MOST MEMBERS OF
THIS YEARS PACKERS INCLUDING THE ONLY 3-TIME MOST VALUABLE PLAYER IN THE
HISTORY OF THE NFL, BRETT
FAVRE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!OTHERS SIGNED IT TOO!
----SPECIAL THANKS TO JIM SIELEMAN, MY COUSIN, AND HIS N LAW WHO WORKED
HARD TO GET ME THIS EXTREMELY GREAT AND THOUGHTFUL, APPRECIATED GIFT! !!
"I WILL NEVER BE ABLE TO PAY JIM BACK TO QUOTE 48" !!! THERE IS NO WAY TO
MEASURE THE MAGNITUDE OF THIS GIFT TO 48!!!!
------THIS LEADS TO SOME MORE GOOD NEWS! 48 HAS BEEN ABLE TO DO SOME
TALKING,, A BIT!!! HE IS STILL ON THE RESPIRATOR BUT I CANNOT EXPLAIN THIS
ACCURATELY, HE IS NOW STRONG ENOUGH TO SPEAK IN A MACHINE LIKE VOICE,
DESPITE THE RESPIRATOR WHICH GOES IN THROUGH HIS THROAT.!!
------48 HAD SOME FUN FREAKING OUT THE NEUROLOGY TEAM-WHICH DOES NOT VISIT
THAT OFTEN, BY SAYING
"WHAT'S UP DOC?"!!!!!!!!!!
-------WHEN THEY GREETED HIM TODAY!! 3 MONTHS OF FRUSTRATION WITH THE
INABILITY TO COMMUNICATE ARE NOW COMING OUT!!! [BIG TIME!!] YOU CANNOT
ALWAYS UNDERSTAND HIM, HE SOMETIMES DOES NOT HAVE THE STRENGTH, AND THE
"MACHINE" DOES HAVE TO BE ADJUSTED IN SOME FASHION SO HE CAN SPEAK WHICH
IN SOME FASHION AFFECTS HIS BREATHING, BUT NEVERTHELESS, HE AND EVERYONE
ELSE IS THRILLED!!!!!!!!
--------I HAVE BEEN SAYING THAT HE IS MAYBE 10 -20% RECOVERED, BUT I WAS
TOLD YESTERDAY THAT 48, MY BROTHER,
WAS MORE LIKE 40%!!!!! MUSCLE STRENGTH IS MEASURED 0-4! HE USED TO BE @ 0
BUT IS NOW @ 1.5 AND THAT FIGURES OUT TO 40% I BELIEVE!!
-------48 FINALLY HAD THE FEEDING TUBE REMOVED FROM HIS MOUTH AND BEFORE
IT WAS THROUGH THE NOSE!! HE NOW HAS A FEEDING TUBE THAT GOES DIRECTLY
INTO HIS STOMACH!! THEY WILL LIKELY USE IT TODAY AFTER HIS SURGERY
YESTERDAY!!
--------STILL MORE GOOD NEWS IS THAT EFFORTS ARE UNDERWAY TO TRANSFER 48
FROM UNIVERSITY OF IOWA TO convenient HOSPITAL IN WATERLOO!! THIS OF
COURSE WILL BRING HIM MUCH CLOSER TO HOME TO FAMILY AND FRIENDS HERE IN
NE. IOWA!! COVENANT IS WHERE 48 WOULD GO NEXT ANYWAY FOR HIS
REHABILITATION PROGRAM !! THIS IS NOT FINAL BUT HE COULD GO, BE
TRANSFERRED AS EARLY AS MONDAY!!! THIS COULD BE HIS LAST WEEKEND IN IOWA
CITY!
-------WHILE THIS IS FANTASTIC NEWS , IN VIEW OF THE INCREDIBLE STAFF @
THE UNIVERSITY OF IOWA , IT IS DIFFICULT TO TRANSFER HIM! THEIR ABILITIES
AND PERSONALITIES HAVE PROVIDED US WITH GREAT TRUST SINCE THE DAY HE
ARRIVED HERE BACK IN EARLY AUGUST! IT SEEMS LIKE LEAVING FAMILY!
IT SEEMS LIKE WE ARE DENYING THEM THE CHANCE TO SEE THE FINAL RESULTS BUT
THERE ARE PROFESSIONALS AND 48 CAN VISIT THEM NEXT FALL WHEN HE COMES AND
SEE THE IOWA HAWKEYE'S PLAY NEXT DOOR IN KINNICK STADIUM!!!!!!!!!!
------THAT SHOULD DO IT TODAY IN THE GOOD NEWS DEPARTMENT!!!! MOTHER WENT
TO IOWA CITY TODAY SO I AM SURE SHE WILL GET AN EARFUL FROM 48!
THAT'S IT ... CHAPTER 25 SURVIVOR 48------THANKS
------MY STORY CHAPTER26
---SURVIVOR 48----------------------------
-------SUCCESS ON MOVING ON UP! 48 WAS TRANSFERRED TO COVENANT MEDICAL
CENTER IN WATERLOO! THE ADDRESS IS GIVEN AND ROOM # IN INTENSIVE CARE UNIT
ON NOV 12,2001! HE CAN SEE OUTSIDE HIS WINDOW FOR THE FIRST TIME SINCE
AUGUST 5TH 2001! THERE IS NO PHONE IN HIS ROOM BUT HE DOES HAVE 3 "ESPN"
CHANNELS!!!! SOME LIMITATIONS ON VISITING HOURS NOW! THE HOURS ARE GIVEN!
THE PHONE NUMBER FOR THE NURSES STATION OF INTENSIVE CARE UNIT IS GIVEN.
-------WHILE HE COULD OF STAYED AT THE IPCU IN IOWA CITY LONGER, COVENANT
IS WHERE HE WAS HEADED NEXT ANY WAY FOR THE LONGER TERM PHYSICAL THERAPY
ANYWAY!!
EVERYONE IN IOWA CITY WILL BE MISSED BY 48 AND HIS FAMILY AND ARE VERY
THANKFUL THEY ARE THERE DOING THEIR JOBS SO WELL!!!!!!!
-------48 IS NOW CLOSER TO MOST FAMILY AND FRIENDS! WENDY, RYAN AND KARA
LIVE ONLY 5 MINUTES AWAY FROM COVENANT!!
--------I DON'T WANT TO SOUND LIKE BUSINESS AS USUAL , LET US NOT FORGET
THAT JUST 3 SHORT MONTHS AGO EACH DAY WAS A LIFE AND DEATH BATTLE FOR 48!!
ONCE AGAIN THANK YOU ALL FOR KEEPING 48 IN YOUR THOUGHTS AND PRAYERS!!!
HE HAS COME ALONG WAY [BABY] BUT HAS A
LONG LONG WAY STILL TO GO!
-------NOVEMBER 19,2001! AS YOU KNOW 48 IS AT COVENANT MEDICAL CENTER IN
WATERLOO, IOWA! HE IS IN THE INTENSIVE CARE UNIT, WHICH IN NAME IS A STEP
BACKWARD BECAUSE HE WAS IN THE INTERMEDIATE PULMONARY CARE UNIT IN IOWA
CITY, BUT THAT IS JUST A MATTER OF DIFFERENT FACILITIES !
------48 HAS A PHYSICAL THERAPY TEAM THAT COME TWICE A DAY!
ONE OF THE MAIN THINGS THEY DO IS SIT 48 UP IN BED WITH HIS LEGS HANGING
OVER THE SIDE OF THE BED. HE CAN THEN SWING HIS LEGS. HE CANNOT SIT UP BY
HIMSELF WITHOUT SUPPORT OF THIS TEAM HE WOULD FALL ONE WAY OR THE OTHER!
[PICTURE THE TIN MAN IN THE WIZARD OF OZ AFTER HIS 1ST MUSICAL NUMBER IN
THE FOREST!]
-------THIS EFFORT SOMETIMES, MORE OFTEN THAN NOT LOWER HIS BLOOD PRESSURE
AND NEEDS TO BE DISCONTINUED!! THE TEAM OF THERAPISTS ALSO EXERCISES HIS
ARMS AND LEGS!
A COMBINATION OF THINGS PREVENTS HIM FROM A MORE ADVANCED PROGRAM AT THIS
TIME ---HIS WEAKNESS AND RELIANCE ON THE "MACHINE" AND LACK OF BODIES TO
DEAL WITH HIS EVERYDAY NEEDS AT THIS TIME DUE TO SO MANY OTHERS ALREADY IN
THE REHABILITATION PROGRAM ! THIS IS NOT REALLY A PROBLEM BECAUSE HE WAS
NOT REALLY TRANSFERRED BECAUSE HE WAS READY FOR FULL REHABILITATION ANYWAY
BUT BECAUSE OF PROXIMITY TO HOME, FAMILY AND FRIENDS!!!
-------AS 48 GETS STRONGER, AND HE NEEDS LESS OR NO NEED FOR THE "MACHINE"
AT ALL, OR THE PATIENT NUMBERS CHANGE IN REHAB, HE CAN MOVE ON TO THE
PROGRAM FULLY! [SWIMMING POOL IS BEING MENTIONED AS AN EXAMPLE]
-------48 DOES SOME COUGHING AND CLEARING OF HIS LUNGS HIMSELF THESE DAYS
SO THAT IS GOOD! HIS GRIP STRENGTH IS CONTINUING TO IMPROVE! HE LIKES TO
SHOW HOW MUCH BY SHAKING HANDS A LOT!
--------48 HAD SEVERAL MORE VISITORS FROM OUT OF TOWN AS THANKSGIVING HAS
COME! HE HAS HOWEVER HAD A LIFE THREATENING EPISODE AND NO ONE COULD SEE
HIM ON THIS THANKSGIVING DAY 2001!
---------MORE INFO IN THE NEXT CHAPTER THANKS!!-------------------
-------- OK THAT'S CHAPTER 26 MY STORY SURVIVOR 48---------------
--------MY STORY CHAPTER 27
SURVIVOR48
1ST OFF LET ME MAKE ONE CORRECTION TO CHAPTER 26 WHEN I MENTIONED A LIFE
THREATENING SITUATION IT WAS THE DAY AFTER THANKSGIVING 2001! YES THE
FRIDAY AFTER TURKEY DAY!
--------48 SOMETIME THE MORNING OF FRIDAY NOVEMBER 23 2001 STARTED TO
HEMORRHAGE [BLEEDING] INTO THE RESPIRATORY TRACK AND VITAL SIGNS WERE
DROPPING TO DANGEROUSLY LOW LEVEL!! DOCTORS WERE UNABLE TO FIND THE SOURCE
OF THE BLEEDING SO 48 WENT UNDER EMERGENCY SURGERY!! FORTUNATELY THERE WAS
A "THORACIC" SURGEON ON DUTY AND AVAILABLE AS THE PROCEDURE TOOK 4-5 HOURS
TO CORRECT THE PROBLEM! IT WAS A MOST STRESSFUL TIME FOR MOTHER!!! SISTER
LORI AND HUSBAND MIKE WERE IN TOWN FOR A VISIT AND TO DO SOME SHOPPING!
THEY WE ALL GREETED MY AUNT LOIS AND HUSBAND HAROLD WHO WERE STOPPING BY
ON THERE WAY HOME FROM OUT OF TOWN! THEY WERE ALL THERE TO GIVE GREAT
SUPPORT TO MOM DURING THIS CRITICAL TIME!
-----UNCLE ROD AND AUNT MAXINE JOINED MOM IN THE EARLY EVENING TO GIVE
SUPPORT!! BUT 48 WAS UNABLE TO HAVE VISITORS AT THIS TIME! MOTHER STAYED
IN HOSPITAL ALL NIGHT! MANY PRAYERS WERE OFFERED AND ANSWERED AGAIN!
------48 APPEARS OK NOW BUT HAD BOTH BAD BLEEDING AND CLOTTING EPISODES
AND IT WAS LIFE THREATENING FOR A LONG STRESSFUL TIME!
-------48 SEEMS TO WEATHERED THE BIG STORM AND THANK YOU ALL FOR YOUR
THOUGHTS AND PRAYERS! GREG LORI AND MOTHER ALL VISITED 48 ON SATURDAY! NO
FURTHER BREATHING, BLEEDING, CLOTTING, FLUID IN THE LUNGS OR SINUS
PROBLEMS FOR NOW! WHEN THINGS ARE NORMAL HE IS BREATHING ON HIS OWN AT
TIMES WITH THE "MACHINE" AS A BACK UP SO THIS IS PROGRESS!
---OK THAT'S CHAPTER 27 SHORT AND SWEET RIGHT?! MY STORY SURVIVOR
48---THANKS~!
---------MY STORY CHAPTER 28
SURVIVOR 48 TEST [FONT=times new roman]TEST[/FONT] DECEMBER 5, 2001
---------48 HAS BEEN TRANSFERED TO ROOM GIVEN AT THE REHABILITATION CENTER
@ COVENANT MEDICAL CENTER ADDRESS GIVEN IN WATERLOO IOWA! THIS WAS A VERY
TENSE PERIOD FOR PATIENT AND FAMILY! THE SECURITY OF IOWA CITY WAS CLEAR
AND THE UNKNOWN OF COVENANT WAS FELT GREATLY!
---------48 HAS A PHONE IN HIS ROOM BUT IF NURSE OR FAMILY MEMBER IS NOT
IN ROOM MAY NOT BE ABLE TO GET ANSWER![NUMBER GIVEN] .
----------HE HAS PHYSICAL THERAPY IN HIS ROOM SEVERAL TIMES A DAY! THIS
WEARS HIM OUT TOTALLY, BUT IS NECESSARY TO BUILD UP HIS ENDURANCE AND
STAMINA!
----------ON MONDAY OF THIS WEEK 48 STOOD UP FOR THE 1ST TIME WITH A LOT
OF HELP~!!! ARM AND LEG EXERCISE REMAIN STEADY BUT SLOW IMPROVEMENT! HE
CAN CHANGE THE CHANNEL ON THE TV WITH A REMOTE FROM ESPN TO ESPN 2 TO ESPN
CLASSIC! THIS IS A MARKED IMPROVEMENT FROM JUST 2-3 WEEKS AGO! HE
CONTINUES TO HAVE GI PROBLEMS ! HE HAS A BEAUTIFUL TABLE TOP CHRISTMAS
TREE WHICH WAS BROUGHT INTO THE ROOM BY NIECE JESSICA WHO HAS EARNED THE
NICKNAME "TURKEY" FOR HER GRANDMOTHER ANN!
----------48 'S ROOM IS DECORATED WITH GREEN BAY PACKER AND IOWA HAWKEYE
POSTERS AND ECT.... TO HELP WITH THIS ORDEAL!
IT ALSO HAS A POSTER OF PICTURES TO SHOW A REAL HUMAN BEING IS HERE AND
NOT JUST A PATIENT OR A NUMBER!
--- 48 HAS AND CONTINUES TO RECEIVE MANY MANY CARDS FROM FAMILY AND
FRIENDS! THESE ARE VERY MUCH APPRECIATED! ONE IN PARTICULAR WAS FROM THE
SAME PRIEST WHO WAS IN IOWA CITY WITH 48 WHO VISITED 48 ON A ALMOST DAILY
BASIS!! HE HAS NOW MOVED ON TO LEAVENWORTH FEDERAL PENITENTIARY IN
KANSAS!!
-----48 'S BROTHER JAY IS OFF TO MEET HIS LOVELY WIFE IN NEW ORLEANS FOR
SOME MUCH NEEDED R AND R!
------ITS NOW DEC20, 2001! WHICH IS THE ORIGINAL BIRTHDAY OF SISTER
WENDY!!
--------48 HAS A RECURRING UPPER RESPIRATORY AILMENT --PSEUDOMONOSIS [S]
-- IT FLARED UP OVER THIS PAST WEEKEND BUT THE GREAT STAFF HERE HAS IT
UNDER CONTROL WITH ANTIBIOTICS AND DOES NOT SEEM TO BE BOTHERING HIM
ANYMORE!! WHEN IT WAS FLARING UP , HE WAS NOT FEELING SO HOT AND WAS EVEN
MORE EXHAUSTED, BUT EVEN THEN HIS CHEST X-RAY WAS GOOD , HIS WHITE BLOOD
COUNT WAS NOT ELEVATED AND WAS AFEBRIOLE--NO TEMPERATURE!!
-------THIS WAS THE TIME PERIOD WHERE COUSIN AND RADIOLOGIST, WHO YOU MAY
RECALL WAS THE FAMILY MEMBER AND FRIEND WHO RECOMMENDED UNIVERSITY OF IOWA
TRANSFER LAST AUGUST DURING THOSE DARK DAYS, WAS IN TOWN TO VISIT AGAIN!
THANKS BERNIE!!
--------THIS AILMENT WAS PROBABLY PICKED UP DUE TO A CONDITION WHICH IS
ALMOST AUTOMATIC WITH A TRACH!
-------48 WAS FEELING MUCH BETTER AS A RESULT OF THE ANTIBIOTICS HE WAS
GIVEN! HE ALSO PASSED A SWALLOWING TEST AFTER DOWNING A FEW TEASPOONS OF A
BLUE CONCOCTION OF MILK AND CORN STARCH! (IKIKIKIKIKIKIKIK)
------HE HAD HIS REGULAR MORNING AND AFTERNOON PHYSICAL, OCCUPATIONAL AND
RECREATIONAL THERAPY SESSIONS!! HE STOOD UP AGAIN USING A "CRANE MACHINE"
AND FOR THE 1ST TIME USED A "BICYCLE" APPARATUS TO PEDAL HIS ARMS AND
LEGS!!
-----SOMEONE SEEING THAT 48 NEEDED TO HAVE HIS NOSE ITCHED A LOT MADE UP
THIS DEVICE USING TO TONGUE DEPRESSORS ALONG WITH "HERKY" [THE MINIATURE
STUFFED MASCOT OF THE UNIVERSITY OF IOWA FROM IOWA CITY] ! IT WORKED
GREAT!
-------SURVIVOR 48 RECEIVER 2 CHRISTMAS PRESENTS BESIDES BEING ALIVE AND
HAVING A GREAT CARING FAMILY AND SUPER FRIENDS WHO CARE ALSO! ONE WAS FROM
THE RECREATIONAL THERAPY DEPT AS THEY GAVE ME A BEAUTIFUL CRIBBAGE BOARD!!
THE OTHER WAS FROM 12 YEAR OLD BOY WHO WE SHARED TIME IN IOWA CITY ALONG
WITH BOTH BEING PACKER FANS WAS A PACKER MINIATURE FOOTBALL WHICH WHEN HIT
DID CHEERS WHO'S NAME IS CRUZ!!
--------OK THAT'S IT CHAPTER 28 MY STORY SURVIVOR 48---------
MY STORY SURVIVOR 48 5-17-05 12:06:23 PM
Hello
everyone! Its been a long time since I updated my condition! so here
goes! 1st off b-4 I forget to thank all my family [U TOO BERNIE] for
all the continued love and care they are giving me on a daily basis!
ESPECIALLY MY DEAR LOVING CARING MOM!!! I would also like to thank my
doctors and my nurses that take such good care of me also!!! ok on
with the story!!
I WAS STILL IN
THE HOSPITAL WHEN I LAST LEFT YOU! I WOKE ONE DAY AND DID NOT KNOW
WHERE OR WHY I WAS HERE!,,,,THE DOCTOR WOULD NOT BELIEVE ME ! I HAD
LOST MY MEMORY FROM AUG 5TH UNTIL NOW LATE DECEMBER 2001!!!!!!,,,,THE
LAST THING I REMEMBER IS CLOSING MY CAR DOOR AFTER ARRIVING @ THE 1ST
HOSPITAL IN WATERLOO!!!!!,,,WOW
YES THE
DOCTORS WERE STUNNED!! THEY BROUGHT EVERY OLOGIST THEY COULD THINK OF TO
TALK TO ME AND ALL ASKING THE SAME QUESTIONS! JAY CAME INTO THE ROOM
AND HE WAS STUNNED AND HAD A PRIVATE CHAT WITH A FEW OF THE
DOCTORS!,,,,,,JAY WOULD COME BACK IN AND ASK ME QUESTIONS OF WHICH 95%
OF THEM I DID NOT KNOW THE ANSWER TO ! HOWEVER THERE WAS ONE QUESTION OF
JAYS I GOT CORRECT AND STILL BAFFLES ME TO THIS DAY!! HE ASKED ME WHO
PLAYED AND WHO WON THE WORLD SERIES PLAYED IN OCTOBER 2001 I ANSWERED
PERFECTLY CORRECTLY THAT MY YANKEES LOST TO THE DIAMONDBACKS 4 GAMES TO
3!!,,,,,,WEIRD! EVERYTHING ELSE BETWEEN AUG 5TH 2001 AND THIS DATE
LATE DECEMBER 2001 WAS A BLANK TO ME!!!...WEIRD
WELL WHEN ALL
THE DOCTORS AND SPECIALISTS HAD SEEN ME AND ASKED ALL THEIR SAME
QUESTIONS ,,,THEY HAD NO ANSWER!!!,,I DID NOT EITHER!, SOME OF IT IM
GLAD I DID NOT REMEMBER AND STILL DON'T! BUT SOME OF IT HAS COME BACK OR
I KNOW BY THE GREAT NOTES BROTHER JAY TOOK ON A DAILY BASIS!!
I CONTINUED TO
HAVE 4 KINDS OF THERAPY !
PHYSICAL
THERAPY, RECREATIONAL, OCCUPATIONAL, AND MENTAL THERAPY! ONE OF MY GOALS
WAS TO DANCE @ MY NEICE, JEN'S GRADUATION PARTY IN LATE MAY!! ,,,I
WORKED HARD EVERYDAY ,,WELL ALMOST EVERYDAY I WOULD HAVE ABOUT 2OUT 5
BAD DAYS THEN!,,,AND WITH GBS [GETTING BETTER SLOWLY] I COULD NOT OVER
DO IT OR I WOULD BE NO GOOD FOR THE NEXT DAY!
I BECAME GOOD
FRIENDS WITH MY THERAPISTS AND WOULD WORK HARD FOR THEM ! ONE DAY I
WOULD BE IN BAD PAIN AND THE NEXT WANT TO GO OUTSIDE AND ENJOY THE
EARLY SPRING WEATHER! THE NIGHTS WERE THE WORSE TRYING TO SLEEP! IT
WAS JUST AWFUL, BUT KNOWING I HAD FAMILY MEMBERS HERE IN THE HOSPITAL
REALLY HELPED ME GET THROUGH THE NIGHTS! BUT THE NIGHTMARES I ENDURED
WERE BACK AND WERE NO FUN @ ALL!
ITS MID
JANUARY NOW AND IM WORKING HARD EVERYDAY SO I CAN TO GO HOME SOONER
BUT THE PAIN AND THE WORK SOMETIMES WERE TOO MUCH ! ONCE A WEEK I JUST
SAID TO EVERYONE , LEAVE ME ALONE AND I WILL WORK HARD THE OTHER 6
DAYS!
I WAS MAKING
FAST PROGRESS
WHEN I ASKED, AFTER SEEING ANOTHER PATIENT DOING SOMETHING THAT I HAD
NOT DONE YET, IF I CAN DO THAT?,,,WELL MOST OF THE TIME MY THERAPIST
SAID NO NOT YET ,BUT ONCE IN A WHILE HE WOULD SAY ,IF YOU REALLY WANT TO
TRY IT WE WILL DO IT TOMORROW ! TO GIVE ME SOMETHING TO LOOK FORWARD
TO!!
I WAS
ALWAYS ASKING MOM AND JAY WHAT ABOUT MY APT AND MY STUFF AND THEY SAID
DON'T WORRY IT HAS ALL BEEN TAKEN CARE OF! SO THAT WAS AN EASE OFF MY
MIND, BIG TIME!!!
I WOULD LIKE
TO THANK EVERYONE WHO CAME BY [EVEN IF I DON'T REMEMBER] AND OR SENT A
GET WELL CARD!! THANKS!!!
I WAS USING A
WALKER ,THE BIGGEST THEY COULD FIND! WALKING SLOWLY AROUND THE BIG
THERAPY ROOM!,,,I WOULD CHALLENGE MY SELF TO DO SO MANY
TRIPS AROUND
B-4 I STOPPED
TO REST!!,,,,1ST DAY I COULD ONLY DO 1 LAP AND I WAS REALLY FRUSTRATED
BUT THE NEXT DAY WHEN I DID 5 TRIPS I WAS EXCITED!!!!
THE BED I HAD WAS SPECIALLY
ORDERED FOR SOMEONE MY SIZE AND LACK OF MOBILITY AND KEPT ROLLING FROM
SIDE TO SIDE TO KEEP ME FROM GETTING BED SORES AND ARTHRITIS AND
PROBABLY OTHER THINGS!,,,,BUT THE NIGHTMARES I HAD IN THAT BED WERE
HORRIBLE AS ONE OF THEM WAS WHERE THE SHEETS WOULD ROLL OVER MY LEGS AND
CRUSHED THEM!!!!,,,,,THERE WERE SEVERAL OTHERS BUT I WILL TELL YOU LATER
IF I DECIDE TO BORE YOU?,,,LOL I WAS ALSO WORKING ON THE PARALLEL BARS
TO WALK AND THAT WAS HARD TO DO! SLOWLY DAY BY DAY I GOT BETTER AND
WAS GETTING EXCITED ABOUT MY IMPROVEMENT ,BUT IT HAD BEEN MONTHS
ALREADY! THEN A BIG DAY CAME ! ,,NO NOT GOING HOME BUT GOING OUT OF
THIS HOSPITAL TO HAVE LUNCH WITH OTHER PATIENTS !!!,,WE TOOK A BUS AND
I WAS STRAPPED IN TO MY WHEEL CHAIR AND MY WHEEL CHAIR WAS STRAPPED IN
ALONG WITH THE OTHERS !I HAD A GREAT TIME , JUST BEING OUT OF THE
HOSPITAL AND EATING , NON HOSPITAL FOOD!!!!!!!
BUT EVEN THIS EVERYDAY
ACTIVITY WORE ME OUT AND WENT BACK TO MY ROOM I WAS BEAT! SO I TRIED TO
SLEEP BUT THE THERAPIST HAD OTHER IDEAS SO WE DID SOME EXERCISES IN MY
ROOM THEN I WENT TO SLEEP!!
I WANTED TO WALK ON MY OWN
DURING THE EVENINGS BUT THE NURSES WOULD NOT LET ME!, THEY HAD TO WALK
WITH ME AND THEY DID WHEN THEY WERE FREE! BY NOW I WAS SITTING UP IN MY
BED WITH A PILLOW ON BOTH SIDES SO I WOULD NOT FALL OVER WHILE I ATE OR
JUST VISITED IN A POSITION OTHER THAN LAYING DOWN! SOMETIMES I FALL A
LITTLE TO EACH SIDE! PICTURE THE TINMAN IN THE FORREST IN THE MOVIE
"WIZARD OF OZ"!!! lol ONE NIGHT I WAS TRYING TO REACH FOR SOME
FOOD ON THE TRAY AND WAS UNABLE TO AS I FELL BACKWARDS AND WAS SPREAD
OVER THE BED ON MY BACK AND WAS HURTING!,,,I DID NOT HAVE MY NURSE CALL
BUTTON IN REACH!, LUCKILY EVENTUALLY WITH MY DOOR WIDE OPEN AND ACROSS
FROM THE NURSES STAND A NURSE FINALLY SAW ME AND STARTED TO LAUGH
LOUDLY!, SHE EVENTUALLY CAME TO HELP ME LAUGHING ALL THE WAY!!...I
HOWEVER WAS NOT LAUGHING AT ALL!!!
KEEP THE FAITH! KEEP THE HOPE!
more to follow of
Survivor 48's story.
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This page was last modified:
July 18, 2006
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