Monday, December 6, 2010

As a phoenix out of the ashes…

How does one describe and live in the shadowy brilliance of The Mystery?  This weekend Jeremy has made phenomenal progress on his journey.  Over the last week Jeremy began sitting on the side of the hospital bed with assistance.  Friday found him cruising the halls of the Neuro floor in a cardiac chair.  By Saturday he was spending longer periods of time sitting in his chair, having extended conversations, and taking a pencil in hand placing it on a dot on a sheet on paper and then drawing a line to another dot.  This young man continues to astound the odds on his rise from the throes of a devastating injury.  He truly is a phenomenon.

Jeremy has been able to demonstrate a full range of emotions…smiling and laughing at jokes (even ones that are questionable as to their relative humor), contemplation, sadness, fear, anger, frustration, happiness, and boredom.  While there are moments of childlike frustration with the inability to master a movement, thought, or verbal expression, there are also moments of childlike tenderness.

While Jeremy’s sheer will to survive combined with the faith, thoughts, prayers, and positive energy of many brought us to this place, one can only sit back and wonder what else is in store.  When The Mystery takes hold of our lives, we are left to consider not only how we got to this place; but also what is possible.  As we could never have foreseen this outcome…we can also only imagine what may lay in store for Jeremy.  This fascinating journey has only just begun…GO Jeremy GO!!!

Wednesday, December 1, 2010

Navigating the Bunny Slope on the way to The Giant Slalom...

YEAH!!! Go Jeremy Go!!!  Jeremy has graduated from the Neuro Intensive Care Unit to a Neuro step down unit.  In the last couple of days he has been finding his way back to the level of functioning prior to his surgery.  He is beginning to express himself again…he has mastered yes and no…and has articulated that he is “frustrated” at times.  Jeremy (with assistance) is sitting on the side of his bed and working to re-establish some movement on his right side.  To date there is still some degree of swelling on the left side of his brain which could therefore have an effect on the maneuvering of his right side.  As Jeremy is only seven days out of an extensively invasive brain surgery, it is within reason to hope that as the swelling abates the functionality will return to the baseline prior to surgery.
            It is difficult to ascertain how much of Jeremy cognition has been affected.  His present day to day memory seems to be maintained; however, his memory of the events leading to his hospitalization is quite limited.  These memory challenges create for Jeremy a sense of frustration and confusion in trying to understand how and why he is in this position.  It is also difficult to assess any effect on his long term memory until he verbal abilities improve.
            Six weeks of a hospital bed would create a challenge for most of us.  Being confined to a bed without the ability to articulate emotion or reasoning and without a firm grasp on how you got there is a daunting task.  While Jeremy has his days of “frustration”, there are certainly indications that he is still up to the challenge of building his skills to move off the “Bunny slope” and progress up the mountain toward the gates of “The Giant Slalom” of communication and navigation.
            Your cards, letters, and messages are a constant reminder of how many people are behind him and supporting him in all his efforts.  Thank you again for all of the prayers, thoughts, and warm feelings.  As each of these cards are read to him, they ABSOLUTELY make a difference in his approach to the day.
            Keep up mantra going…GO Jeremy GO!!!

Sunday, November 28, 2010

A Week of “thanks…giving” comes to a tremendous close

After a difficult Friday…Saturday was a day filled with sighs of relief and many heartfelt smiles.  Late Friday night there were signs of possible good things to come and sure enough on Saturday...Jeremy did what he has been doing for the last five weeks.  Jeremy left the “odds” in the dust and successfully sustained his extubation (removal of the breathing machine necessary for his surgery).  Through the remainder of day he was somewhat “antsy” but maintained all his vitals well within normal limits.  

Today Jeremy has responded to commands…smiled appropriately indicating his sense of humor is intact…and attempted to forms words.  There are periods of a lot of activity followed by indications of headaches, then periods of rest.  All of these things expected.  It is still too soon to tell what Jeremy’s baseline of abilities will be following surgery, but early indications are that there is little if any decrease in abilities.

What a week it has been…so many things for which to be thankful: 
¥       Life…The amazing ability of a young man to challenge all the odds and fight to recover from a devastating brain hemorrhage and a 17 hr marathon surgery.
¥       Neurosurgeons…Individuals dedicated to detail and precision; exhilarated and challenged by the intricacies and cutting edge frontier of the brain and willing to allow collaboration with the mysteries of life
¥       Family & friends (old& new & and cyber acquaintances).  How does one begin to value all of the thoughts, prayers, and positive energy being sent in Jeremy’s direction?  How can there be enough “thank you”s said to come close to the depth of gratitude we feel?  Know please that all of the prayers, well wishes, emails and cards, are truly appreciated.
¥       The Sacred…the home of faith…where the words of individual prayers and the energy of thoughts are combined to initiate a mysterious response in the body of another which defies explanation and demands a sense of humility and awe.
¥       Love…the force connecting us all…a mother to a son…a sister to a brother…a father to a son…a brother to a brother…a daughter to a father…friend to friend…grandparent to grandchild…uncle to nephew…aunt to nephew…cousin to cousin…   Thank you for opening your heart…your connection to Jeremy and your expression through thoughts, prayers, or simply visiting this blog is vital to the drive to encourage, support and empower Jeremy.

The rally chant continues…Go Jeremy Go!!!!

Friday, November 26, 2010

Hurry up and wait…

Today has been a difficult day.  This morning the doctors removed the ventilator.  Jeremy was able to maintain his oxygen saturation in his blood for about one hour.  After that he simply tired out and the doctors needed to reintubate him.  Jeremy also struggled with maintaining his blood pressure early on today.  For the first part of the day his pressure was running very low.  As the day drew on his blood pressure began to be more controlled.  Jeremy is only 48hrs out of surgery; given the complex nature of his surgery and the sheer length of the surgery itself this response is certainly not unusual.  Jeremy has actually been awake most of the day.  With some rest tonight and a greater time away from surgery, it is hopeful that tomorrow the doctors will have more success with the extubation.  

On a more positive note, Jeremy recognized and responded to his mother as she sat by his bedside today.  He continues to press on the road to recovery...“Go Jeremy Go”!!!

Thanks to each of you continuing to visit this blog offering your prayers and support.  

Thursday, November 25, 2010

"We have liftoff..."

We are now at 24 hours post op.  This morning Jeremy was taken to radiology for an angiogram.  The reports from the doctors are that so far everything looks great and they are very encouraged.  For a few moments this morning they lifted the sedation and Jeremy opened his eyes.  This evening with his mom at the bedside they once again lifted the sedation and Jeremy opened his eyes and squeezed his mother’s hand.  How is that for a Thanksgiving miracle?  It is hard to describe the relief, determination, and gratefulness of a mother’s heart.  While they sedated him again quickly thereafter, he has come out of the anesthetic fog long enough to communicate and declare once again his willingness to push forward and achieve what seems impossible.  To that we cheer with fervor…“Go Jeremy Go”

Wednesday, November 24, 2010

“To sleep…perchance to dream”

Well a 5-6 hr surgery stretched through the day into an almost 17 hour surgery.  While the surgery went a great deal longer than anticipated, the surgeons feel like Jeremy did well.  The doctors were very pleased with the way things went.  The AVM was very large extending into one of the ventricles in the brain with several smaller AVMs coming off the original.  With this level of complexity, it is no wonder the surgery required the enormous length of time.  For the next 12-24 hours Jeremy will remain sedated and be closely monitored in the Neuro intensive care unit.  The doctors indicated that there may be a slight amount of regression in his abilities, but given Jeremy miraculous progress over the last four weeks it is hard to say.

While this period of sleep has been long and intense for friends and family, it is my hope that for Jeremy the time has been a time to dream.  With any luck for 24 hours Jeremy has been able to realize a break from the reality of his fight and enjoy a virtual place where “normal” has nothing to do with a hospital.

Happy Thanksgiving…today the meaning is profound and intense.  Turkey with all the trimmings…thankful; a TV on which you watch the game…thankful; the life of your son saved by amazing neurosurgeons…a lifetime of gratitude.  

Thanks to all of you for your thoughts and prayers…the journey continues…please continue to walk with us.  Thanks for all the cards and well wishes.  Please keep up these contacts…each card or letter is read to Jeremy by his mom.  Jeremy will be pleased to hear all your thoughts and encouragement as he truly starts his road to recovery.  The address for cards or letters is:

Jeremy Shugrue
Neuro ICU
KU Medical Center
3901 Rainbow Blvd
Kansas City, KS  66160

Surgery Status Report...

Report from the OR team is that Jeremy’s surgery is going well and his condition is stable.  The physician, however do not expect to be finished with the surgery until 5-6pm(CST) so keep those thoughts and prayers going.  We will continue to update the blog as the information on his progress changes. 

One step closer to “Fine”...

If we were to use NASA analogies, the last four weeks could be characterized with the phrase...“Houston, we have a problem”.

Today...with prayers offered, received, & answered we will hopefully find Jeremy one step closer to “Situation resolved”...one step closer to fine.

Jeremy’s evening was fairly uneventful...he fell asleep around 10:00 and slept through until about 2:00 this morning.  

When he woke up, we had the opportunity to experience what we hope to be a glimpse of the future...Jeremy was talking!!!  His speech was at times very clear and at times kind of like you sound when you first wake up, but he was communicating his thoughts.  We talked about the holidays and some childhood memories from Santa to the Easter bunny.  It was Jeremy full on and very present.

As the time grew closer for the surgery and more activity filled the room, he started to show a little anxiety and return to being a man of few words.  Those precious moments early this morning will be treasured and used as a vision of the days to come.

The radiology/surgical team came in around six to place him on a ventilator and take him to MRI then directly to surgery.  The MRI will allow them a very precise picture of the AVM and offer them the best information going into surgery.  The surgery will last at least 5-6 hours so keep those positive thoughts and energy going.

Today when you are making polite conversation with people and you hear yourself say “I’m fine...how are you?” take a second to whisper a prayer for Jeremy.  Ask for a successful surgery and for the day when he can respond “I’m fine...what’s up with you?”

Tuesday, November 23, 2010

Step by step by step

With the second of two embolizations behind him, Jeremy is pushing forward.   The doctors believe they were able to shut down about 75 % of the AVM which will make the resection of the AVM less risky.  The belief is that this should go well.  So we set our sights on Wednesday and work toward taking positive thoughts, feelings of encouragement, and a wellspring of prayer support into the OR for what will hopefully be the third and final procedure. 

Just wanted to say thank you so much for all the cards and letters sent to Jeremy…I read all of them to him and he listens to every word...please keep them coming... they are a great source of encouragement in the difficult moments and celebration in the moments when we have just gotten over another hurdle…they really are helping him get better!!!!!!

The days seem to see-saw…

Thursday was a very difficult day for Jeremy…he was so sad, he slept a lot…his face was sad and his tears rolled down his cheeks...I think it is starting to hit him how much his life has changed…I simple held him…what better place then mamas arms……

Friday was a great day with Jeremy...he was awake and interactive.  My brother Steve came in with my mother...and Jeremy thought Steve was the funniest thing ever…he was LAUGHING!!!!!!

Saturday Jeremy continued to make strives......he shows flickers of his sense of humor...and yes does he does think he's funny..... continues to make strives.....he shows flickers of his sense of humor....and yes does he think he's funny

Unfortunately the night was a bit much...the weekend night nurse gave him an ambien...why  I don't know...but oh man…he was off the wall...it work the opposite on him...:(
Needless to say there will be no more Ambien…and Sunday night with our regular medication regime he went to sleep early and slept like a baby.

Sunday night we had a heart to heart......he was shaking his head yes and no to questions.  I asked him if he could hear us when he was unconscious in the days after the initial bleed and he shook yes, asked if it made him mad...he shook no....I asked him if it made him sad and he said yes....that made me sad for him.

Well, the week has started and the time is drawing closer for his BIG surgery.  In order to remove the AVM the doctors will have to approach his midbrain and some very key areas.  Precision is essential...I’ve got to say I am very nervous……it is his last surgery (hopefully).  He has worked so hard to reach this level of his recovery…in the spirit of the season I would be beyond grateful if he could maintain his progress following the removal of the AVM.  So again I ask everyone to lift him up in your thoughts and prayers…so that he will glide through this one easily.....

Saturday, November 20, 2010

From the beginning...

Miracles...you call it
Sometimes...not very often...we get to be part of something which defies everything we thought to be true.  Sometimes...we get to witness a miracle and take part in the miraculous wonderment of the work of something bigger than ourselves.  Right here...right now in this city such an event is unfolding before our eyes.  Let me tell you the story of the fight of a lifetime...a story of the human spirit, the power of positive thinking, and the power of prayer.
On October 15th, 2010, a 30yr old man’s life changed course; his life and the lives of hundreds of others would be forever altered.  Jeremy went to bed that night with a headache and time for him stood still.  Sometime late in the night before the first hint of dawn a part of Jeremy's brain exploded.  This sudden rupture spewed blood into his brain causing him to lose his ability to wake up, move, and communicate.  His brain went black.  The capacity to regulate his own bodily functions short circuited and he lay motionless as life seeped out of his body.  By morning his body was lifeless and his breathing was very labored; only a weak flicker of life’s light remained.
EMS was summoned and responded with swift arrival and transport to the nearest hospital.  Sirens blared and lights flashed as they came to an abrupt stop in the ambulance bay of St Luke’s Hospital.  The ambulance doors flew open and the paramedics quickly crashed Jeremy’s gurney through the doors of the ER in to the trauma room for immediate attention.  The ER doctors and nurses worked feverishly to establish life supporting connections.  A tube was placed in his trachea allowing a machine to breathe for him.  A catheter was placed into his brain to drain the blood and relieve some of the pressure.  A central line was placed in his upper chest so fluids and medications could be given.  And a catheter was placed in an artery in his wrist so his blood pressure could be closely monitored.  Jeremy laid motionless; not responding to any of it.  By all clinical signs, Jeremy's prognosis was very grim and the doctors held little, if any, hope for him.  The next 72 hours would be telling.
Time ticked by...every agonizing minute Jeremy slipped further and further away.  The pressure in his head continued to be way too high which could lead to brain death. He had several different IV fluids being pumped into his body to try and help rekindle his life flame, but he continued to fade away.  Soon the medications were no longer effective and the doctors called a meeting with the family.  The 72 hour window had come and things were grave; some decisions needed to be made.  The agony of his family and friends was palpable...a vortex of wrenching grief gripped everyone.  Tears streamed down the faces of each person who tried to choke out the words to update others.  Family came in from all over the country and friends from years of camaraderie flooded the waiting area; every one supporting each other.  Word got out to others across the country.  People sought out their friends, family, and congregations...people that didn't even know Jeremy began praying for him.  Then those who heard his story brought in others from different cities and towns, even different countries to start praying for Jeremy.
Six agonizing days after Jeremy went to sleep that fateful night, things continued to get worse.  The reports were in; he had been neurologically devastated.  He would have no ability to function on any level, other than reflexive.  Simply stated Jeremy would have no quality of life; he would be in a persistent vegetative state.  Knowing his wish not to live without any quality of life and honoring the spirit of giving he lived out of, his desire was to be an organ donor.  The family gathered at his bedside and holding hands they gave Jeremy permission to go if that's what he needed to do.  They said their tearful, heart shattering goodbyes separately and as a family.  Preparations were made to take him off the vent and allow his organs to give life to others who may need them.  Continuing his essence of giving, this would be the ultimate gift.
While the day grew closer for his liberation, the family was brokenheartedly putting his memorial service together.  Family and friends gathered to walk with Jeremy and stand with him as he transitioned from this earth.  He was wheeled down to a surgical suite directly across from the OR theater where another team of doctors would harvest his organs.  The procession moved somberly with him; tears flowed freely and the air in the room hung heavily on the shoulders of all.   As the breathing tube was removed his family and friends were gathered around him while the gowned surgical team waited just outside the door.  The room was deafeningly silent...a vacuum.  Breathing for his family and friends felt difficult...but not for Jeremy...he kicked right in by himself with a loud snore.  His mother tenderly cradled his chin to help support his airway while he breathed on his own.   Minutes seemed like hours as the 90 minute window when organs can be recovered began its count down.
Mixed feelings of anxiety and hope swirled around in a blended matrix entangling everyone in the room as the time window closed and Jeremy’s heart continued to beat strong.  A strange feeling of uncertainty and confusion about what to feel or do next played on the faces in the room as they prepared him for transfer to a regular hospital room.  The anticipatory drama of intense grief and sadness awaiting the immediate loss of a loved one suddenly changed directions.  There was almost a physical jolt as everyone suddenly slammed gears, down shifting as if an 18 wheeler barreling down a steep grade. 
Silently the crowd filed out of the room and dispersed as Jeremy was moved out of the OR suite with his mother, father, and sister in procession.  He was settled into what was called the palliative care floor; a place to keep him comfortable until he passed. His family was once again thrust back into the abyss of the unknown…the vast never ending waiting.  While here Jeremy would only receive medications to help ensure he had no pain or anxiety…basically, to keep him comfortable.
Over the next four days his mother and sister stayed by his side; bathed him daily, washed his hair, and kept him as comfortable as possible.  There were moments of great tenderness as they stroked his hair and reminisced; telling stories as the room filled and emptied with friends and family around the clock.  His mother would curl up at his side holding his hand through the night to be with him letting him know he wasn't alone and not to be scared in case he might slip away during the night.  During this time he was not receiving food or fluids; he was not awake and was not responsive to anything.  On the second day, Jeremy’s respiratory rate slowed way down.  He was breathing only 5 to 6 times a minute although the oxygen level in his blood remained within acceptable limits.  Jeremy was an enigma to his doctors and nurses.  They continued to give him outstanding care and compassion, but were sure his time was now very short.  Being only days before his 31st birthday, the thought was he might be waiting for his birthday to leave his earthly home.  His family and friends continued to congregate by his side, determined to be with him when he decided to let go.
The night before his birthday was very difficult for his mother.   Along with his sister, she sat with him late into the night finally laying her head at his side and falling asleep holding his hand.  About two hours later, she woke up to see her son with his eyes open appearing to be looking out the window.  She crawled up beside him and whispered quietly in his ear for the next hour or so.  Jeremy’s mom reminisced with him about that day 31 years ago when they were together bringing him into the world.  And she would now be with him if he decided to leave.  Dawn broke.  Jeremy’s mother and sister bathed, shaved, and shampooed him for his birthday while playing the music of his childhood in the background.  Shampoo whipped through his hair to the rhythm of "Beat It" and “lotioned” his body down to the likes of "Thriller”.
Fairly soon after his pampering “spa day”, the doctor came into the room.  It had now been four days without any food or fluids, but remarkably Jeremy's breathing had improved.  When the doctor came in and stood at the foot of the bed to review Jeremy’s progress we all were surprised and amazed by the improvement in his breathing.  The doctor suggested that given Jeremy’s miraculous survival, his apparent determination, and will to fight through this devastating condition, then it was reasonable to support him with nutrition and hydration to see if it might improve his recovery.  Just to double check, Jeremy’s mom leaned down to him and states, “Jeremy, if you want to fight, if you want us to feed you, please let us know.  Give us a “thumbs up".  There was a slight stir of his hand, a quiver of his fingers…could it be…we all stared in total disbelief.  Jeremy slowly, weakly lifted his thumb.  Suddenly all the air in the room rushed out as his mother, sister, and doctor gasped in complete shock.  Recomposing himself, the doctor quickly stated that could just be a reflex.  So, we asked him again…and again…each time he rendered a “thumbs up”.  Suddenly the room exploded with excitement and the decision to fight for his life had been declared.  The fight was on and the feelings of elation and apprehension ruptured within all of us.  But now…Jeremy had made the call. 
Jeremy was moved to a skilled floor (a floor where patients get fluids, tests, and medications).  Labs were drawn and miraculously his blood work came back perfect.  Feedings and fluids were started and the fight of his life was on.  With each passing day Jeremy showed improvement, slowly he started his journey back.  He would open his eyes, first had a distant look but in a few days there were flickers of Jeremy when you looked in his eyes.  Yes, he is still in there.  As days passes by, more of Jeremy’s personality would show itself in flashes of familiarity.  Dr Rendell, his Neurosurgeon, became one of Jeremy's many fans, and joined the fight to support his struggle.  Dr. Rendell and his team began planning the steps needed to treat his AVM (arteriovenous malformation: a tangled abnormal formation of vessels), the source of his bleed.  Again his friends and family rallied to help him recover; at first his recognition of things was distant.  After a few days he became more awake and interactive…still a long, long way to go…but progress.  Thoughts and well wishes continued to pour in from all over the world. 
At the two week mark, it was apparent he would need to have some very specialized care to obtain the optimal recovery toward which he was starting to show potential.  The decision was made to transfer him to a hospital more equipped to handle his care and treatment.  He was transferred to KU Medical Center where Dr. Rendell and his team would care for him.  Within days of being there his progress continued to grow.  He still was not really verbal, although he spoke a few sporadic words and began following some commands. This was exciting news because it indicated he had the ability to have cognitive thought.  He continued to astound everyone and began showing signs of his personality and sense of humor.
At week four after his bleed, the repair phase is now underway; it is a staged process.  There will be three different types of brain surgeries he will need to survive: an embolization (injection of glue substance to close down specific vessels) of as many vessels of the AVM as they can get to in two separate procedures followed by the actual removal of the AVM through a craniotomy (removing the AVM through a circular opening surgically created in the skull).  Jeremy needs to endure these procedures, and then begin his rehabilitation.  So his road is still very long and the fight is far from over...he has literally come from death’s door and with the help of all those praying and wishing him well, his journey will be supported by all that strength. 
As you offer prayers of Thanksgiving this week, I ask that you consider adding Jeremy’s miraculous fight and his opportunity to reestablish his life to your gratitude list.  I believe in the strength of numbers and the power of positive thought; therefore, my hope is that any of you who wish to support Jeremy’s recovery will join in and keep him in your thoughts and prayers.  Tell your family, friends, and neighbors Jeremy’s story and ask them to also pray for him.  Send Jeremy your thoughts and wishes to the KU Medical Center, Neuro ICU. 
Yes, Kansas City...there really are Miracles.........you just have to believe.