Some camera phone shots of Billy, Vitamin D, Doggy, Gary, Steve, Scotty and Sherry:

To my key helpers - thanks for making the chamber a reality!!!!!!!!!!!!!  Love Sophia

My original message for those looking at the site for the first time:

We all are hurting from this tragedy and wish Billy the best. 

He is blessed to have the network of extended family that

exists in our wonderful friendships that help us all cope.

The outpouring of support and love shown to Sophia, the De Guido family,

and to each other has been tremendous and greatly appreciated.  

Unfortunately, some of the information floating around regarding Billy's condition is truly misinformation.  Our goal with this website is to keep everyone updated with the most accurate information available right from our crew at the hospital.

Thank you, Jeremy, Steve and Debbie

contact - steve@nusites.com

Disclaimer:  I used our friend ET and Sharon's website to post these updates since it was an easy domain to remember and with the spelling of De Guido, let alone who knows last names in our communities, just getting people to the site may have been tricky. 

Please share this site with anyone who may have concerns:

powercatcharters.com/Billy  (Billy is case sensitive)

Billy's Condition as of April 23rd, 2009:

• Billy is technically charted in his room as:  Anoxic Encephalopathy

• He has had a breathing tube since the first day to assist his lungs and to reduce the load on his body.  He is given 14 breathes from the tube, however, he often takes more himself as his body demands, which is a good sign his lungs are working well.

• He had a tracheotomy performed April 20th to remove the breathing tube from his mouth and reduce the irritation of that tube.

• April 22nd they removed the breathing tube since his lungs seem to be working well on their own.   He is still breathing a high mixture of oxygenated air to assist in healing.

• His eye contact has become more focused than in the first 3 days and he reacts to disturbances and interaction with visitors.  He's shown pupillary light response, corneal reflexes (he blinks when you move your hand quickly towards his eye or when you touch his eye lashes), and motor responses to pain (all which show he is coming around and improving). 

• He has smiled on queue to certain statements that his close friends know he would laugh his ass off under normal circumstances and also smiles when his family speaks to him.  So he hears us and is in there fighting!  AS WE KNOW HE WILL!

• Later today or tomorrow April 24th he will be moved to a regular room.  Stay tuned for the room number and floor.

Billy's mother Kathy and sister Laura are staying with Sophia.  The rest of the family, brother Jimmy and his "wife" Jana (they seemed married), Billy's children Joey, Billy and Jackie have all had to return to NY.

Updates as of April 24th, 2009:

• Billy has been doing better and has been moved to room 489.

• He was sedated with morphine today as he was fitted with a nutrition tube to keep him hydrated and properly balanced with foods while he recovers.

• He should be able to see his friends again by tomorrow.

So please stay positive and keep the support rolling in for our friend and his care giving support group.  We all need each other during these times as much as Billy needs us.

Updates as of April 25th, 2009:

• Huge day - Billy asked Sophia for "WATER" during a morning visit.  This means he is still making progress on his recovery and is becoming more aware.  What a wonderful day!

• About 9 pm Billy repeated full sentences and laughed.

Updates as of April 26th, 2009:

• This morning Billy was visited by many friends, as usual, and has been talking all morning with them.  It's still early in this new phase and he needs his rest, so if you do visit him, please keep things brief so he can accumulate energy to continue his progress.

Updates as of April 27th, 2009:

• Billy will hopefully be having the trachea tube removed in the next week or two, however until that happens he is in a compromised state and is very vulnerable to catching an infection.

• Billy currently has an slight infection in his trachea, so please pay attention to the following rules:

• If you have the slightest cold or any infections please refrain from visiting until you are 100% recovered.

• If you visit please use the antibiotic foam located in all the halls of the hospital, using a golf ball size of foam rubbed thoroughly around your hand and fingers.  Also be very cognoscente of what you touch after applying the foam so that you don't pick up any bacteria on your newly clean hands.

• Per the request of Sophia and the De Guido Family Visiting Hours will be 9 am  - 8 pm, and no visits from 11 am to 1 pm to give him a midday rest.

• Also, limit the visiting time to 10 minutes or less.

• We are not discouraging anyone from visiting, just trying to manage it wisely, so please keep coming, just limit it until the tracheotomy is cleared up.  Once he heals from the tracheotomy he will be able to speak without so much effort and then we will all enjoy the visits that much more.

Again, we appreciate the love, the support, and the stimulation that everyone is providing and it is going to be needed for a long time.  However, we all need to be aware of Billy's vulnerability at the moment and the crazy amount of bacteria running around in hospitals (i.e. MRSA click here to learn more which is not what he has, but it can be transferred, so please be very conscious of cleanliness).

Updates as of April 28th, 2009:

• During early therapy Billy was told to count to 20 and he did.

Updates as of May 2, 2009:

• Billy's lungs are clear.

• His heart is working well, however, he is taking medication to help.

• His trachea infection has been controlled and has cleared up.

• The trachea specialist has fitted Billy with a smaller tube and eventually will remove the tube altogether. 

• PLEASE DON'T feed or give water to Billy even if he asks you for food or water! His throat reflexes which automatically send the food and water to the right place and not the lungs is not yet up to speed.

• He will be going to the specialist within the next week to do the throat reflex test to see if he can start eating solid foods and drinking liquids.

• He is not on any sedatives or pain killers except when they clean the trachea tube area, which is very hard on him and makes him very agitated.

• As he is getting more and more cognitive of what is happening and where he is, he has started to tell Sophia he wants to get out of the hospital and go home.  Who can blame him.  However, the hospital is doing a GREAT JOB and the staff has become accustomed to Billy's "celebrity" status with all his family and friends.

• The doctor has said that Billy is not getting enough sleep, so if you visit and he is sleeping, please let him sleep and come back another time...at least for a couple of days to let him recoup.

• Jimmy, Billy's younger brother, asked Billy if he wanted to go and get some burgers and beers, Billy responded with his grin "no beer...vodka".  

• The Kentucky Derby was on TV in the room today and when the Star Spangled Banner was played, Jimmy asked Billy if he knew what that was and he immediately responded Star Spangled Banner.

• When a finger is placed over the trachea tube to allow the air to pass correctly through his throat and out his mouth to produce speech, Billy's speech is clear and the cadence of words is very close to his cadence prior to the heart attack.

Updates as of May 5, 2009:

• The trachea tube has been removed and Billy has been talking more as expected. 

• Jeremy spent a full hour today with him, while Sophia and Kathy took a break, Jeremy said they were having conversation the whole time.  Also, Jeremy put one of the ear buds in in Billy's ear and the other in his own ear, and they both belted out Billy's favorite song - much to the pain of the other patients ears :)

• Jeremy asked him questions about who would win in a poker hand if Billy had Ace King and Waiter-Steve had a pair of tens.  Billy said "Steve would win...grrr my nemesis."

• Billy has movement in all his limbs except his right arm.

• The swallow test should be Thursday or Friday.

• The physical therapist said he is very close to being able to sit in a chair.

Updates as of May 6-12, 2009: 

A Moment for Perspective - Billy has achieved wonderful progress from where he was a month ago, however a long rehabilitation lies ahead for Billy, Sophia and the DeGuido family.  They will need our help physically, financially (see rehabilitation fundraisers) and spiritually.  I've always said Billy is the toughest guy I've ever met, who never complained about anything physically or personally to his friends. 

Positive Thoughts - Billy's potential at this point is a full recovery until he shows us differently, however, we all know that there may be plateaus, peaks and valleys that he will have to overcome in the next months and even years.  Remember everyday that something good happens, he is moving closer to his potential, no matter how small the event, it's still progress.

Here's the events that have occurred in the past week:

• Room number change: He has moved to 617 which is equipped with a zippered net bed to protect him from rolling out when he sleeps or tries to move too much.

• He passed the Swallow Test.  He is being fed foods that he can easily chew like beef stew, scalloped potatoes and chocolate pie.  He is still doing the feeding tube for 12 hours per day for added nourishment, but should be weaned off within a few days.  He has told Jeremy to get him a real piece of meat, so his appetite is growing (Please don't bring in food yet).   He is drinking liquids normally. 

• The Trachea hole is healing nicely but still must be taped shut.  Since the air doesn't escape so easily through the hole Billy speaks much more easily and clearly.

• Lung Treatments:  This is a misting of medicine to help clear his lungs.  Billy hates the smell of the mist.

• Nurses from the original CCU visited Billy to see how the "Miracle Man" was doing.  In the first few days in CCU some of the staff originally thought Billy had very little chance of making it, now the staff is so inspired by his progress they come to visit on their break.  Even his doctor said he is a 1 in a 1000 case to make the recovery that he is doing.

Billy's Cerebral Status:

• Billy's recognizes most people who visit and that's a lot of people.  His speech is clear and his laugh is exactly as we remember.  He performs increasingly more cognoscente conversations making references to past events and people with amazing accuracy and then every once in a while he drifts out of focus. 

• When he is with "his crew" of sports buddies and the locker room chatter flies, Billy is right in there with quips and rips just like the trash talking that sometimes occurs during the heat of battle, so we know that tiger is still inside him.

• When Billy is asked to recognize items held in front of him, some days he recognizes most of the items, however, some days he struggles.

Billy's Physical Status:

• The physical therapist said he is very close to being able to sit in a chair. 

• Billy can use his left arm and left leg pretty well, however, his right arm and leg are more difficult. He is aware of the right side not working and is already showing determination to get them working again. 

• Billy cannot yet sit up on his own, but is trying to push himself up in the bed to a sitting position with his left arm only.

• If Billy regains the ability to use his right side, which is his dominate side being right handed, he will need therapy to help relearn to feed himself, use a pen, brush his teeth etc, otherwise Billy will adapt and use his left for everything, but then again that will require therapy.

Updates as of May 13-19, 2009: 

Here's the events that have occurred in the past week:

May 16th - Significant update:  With friends and family in his room, and two under his arms for support, Billy walked around the hospital room.  He lifted at the knee and stepped forward on his own for about 15 steps.  He also showed movement in the right arm and hand.  Big Day on the forward progress of the "Miracle Man"! 

Billy's Physical Status:

• While doing physical therapy he was able to stand without any assistance for over a minute.  A female physical therapist who had worked on Billy a couple of weeks ago visited Billy to watch him in action with another physical therapist.  She said she wanted to come by and see him and his progress because it was also inspirational to her and her field.

• With light assistance Billy walked around the hallways twice for around 15 minutes.

• Billy's right leg is showing progress, however his right arm's progress from last week is minimal.

• The Trachea tube has successfully closed up and allows Billy to talk more easily.  He even announced the beginning of the Poker Benefit over the phone saying "Shuffle Up and Deal!"  That was very cool!

• He is eating 3 meals a day plus snacks.  He is finishing all his meals.

• He is still getting Lung Treatments:  This is a misting of medicine to help clear his lungs.

• His eyes dilate, however he seems to not be able to see very well at the moment.

• The Cardiologist doctor said they are waiting for him to be well enough before they start testing. 

Billy's Cerebral Status:

• Billy's ability to hold longer conversations has increased and he is more cognoscente about greater amount of topics.

• His spirits at times are very high and then sometimes very frustrated.  When guests visit this does bring his spirit up, so continue to visit!  When he is hanging out with his regulars - Sophia, family, Jeremy, Billy and Angie, etc. he starts showing greater frustration with his situation as we all would if this happened to us.

May 17th - Significant Fundraiser update: 

I received an email from some friends of ours who will be known as the "mystery couple" who pledged to MATCH/DOUBLE the "Bracelets for Billy" fundraiser total.   They requested to stay anonymous, however their generosity will be infamous to this campaign and our ability to help our "miracle man" get back into normal life again. 

Updates as of May 20-26, 2009: 

Here's the events that have occurred in the past week:

BILLY WAS MOVED:  Pepin Heart Hospital Room 112 (building next door)

May 23, 2009 - Cardiology Test Results

What happened to his heart?  Billy suffered a LAD (Left Anterior Descending) artery lesion which caused trauma and damage to the tissue on the left side of Billy’s heart.  Since the left ventricle of the heart is what pushes the blood through the body, Billy’s EF (Ejection Pressures) are reduced to around 15%, (normal is around 50%-60% for most people).  This Ejection Pressure may increase slightly over time as his heart may create Collateral Circulation Growth (new veins that carry blood where the damaged artery should be carrying blood).

What can be done medically?  A Stint bypass is usually performed to prevent damage to a generally healthy heart, however, the damage to Billy’s heart is already done and due to his medical and neurological status a stint or even open heart surgery is not currently recommended.  Since his Ejection Pressure is lowered he is now at a greater risk of ventricular fibrillation and cardiac arrest, so a Defibrillator will be installed Tuesday, May 26^th.  This device will monitor his heart and automatically “shock it” if any further cardiac fibrillations occur.   Medications will be given to help preserve his heart functions.  

What does this all mean for Billy’s life?  His heart and brain have both suffered a trauma and have been injured to some degree.   Symptoms may also include fatigue, shortness of breath on exertion, and decreased exercise tolerance. 

Please remember, with these types of injuries it takes up to a year to determine how much recovery a person will make.  Billy is a fighter, so let’s all continue to remain in his corner and stay optimistic for his best recovery!   Your continued support of Billy and his care giving group is still greatly appreciated!  If you’ve had experience with family or friends in these situations and you have positive information to share, please don’t hesitate to chat with Sophia, she wants to hear from you. J

May 26th, 2009 - Defibrillator installed.  The surgery went perfect and Billy was back in his room in a few hours.  Again, if you visit Billy please pay special caution to not bring in any germs and use the hand sanitizers available in the hallways of the hospital. 

Updates as of May 27-June2, 2009: 

Here's the events that have occurred in the past week:

Billy has been moved to Room 529 back in the original University Community Hospital Building. 

Billy's Physical Status:

• He is still recovering nicely from the Defibrillator surgery.   However, please don't ask about the Defibrillator surgery since he generally starts to pull at that area once people talk about it.   He needs another 2 weeks for that area to heal.

• All his medications are in pill form except one.

• He was sitting in an arm chair and he lifted himself to a standing position without any assistance.  He then wanted to walk around the hospital. So with the assistance of two people at his sides, holding his arms for guidance, he walked about a 1/4 mile around the hospital.  He went down the elevator and outside for a breathe of fresh air.

• On another walk around the hospital with Billy Wynn and Sophia, Billy DeGuido said he wanted to jog/trot. So they proceeded to trot down the straight-aways...amazing!  Afterwards, Billy asked to take a shower (the first request for a shower).  So they were given a shower chair from the hospital staff and Billy took a shower.  Sophia washed his hair and scrubbed him up and he felt great.

Billy's Cerebral Status:

• He is having good and bad days when it comes to his emotions.  Most of the time he is upbeat and fun when he has visitors as if he is the host of a social gathering.

• He talked with Joey (his son) on the cell phone and held the phone himself .  He then closed it himself at the end of a nice conversation.

• He has exhibited a few short term memory abilities.

Billy is always so glad to have visitors so please keep coming and boosting his spirits! Each time I visit I'm amazed at the progress/changes.   Sometimes they are subtle, but they are progress...little miracles...yes!

Updates as of June 3-9, 2009: 

Here's the events that have occurred in the past week:

Billy's Physical Status:

• He has just about fully recovered from the Defibrillator surgery.

• His eyes were tested and they are functional, however, his brain is not receiving the messages sent from his eyes and he currently can't see.

• He is receiving daily physical therapy for about an hour for range of motion and balance.

• His overall muscle atrophy has stopped and he is working on getting back strength and tone.

• He is getting his endurance physical therapy from his friends and family.  He's walking and sometimes trotting the hallways, however, still with guided support due to his lack of vision.  He makes about 5 or 6 rounds and goes out to the food court downstairs as well for fresh air.

• He started using a small exercise bike that works his legs and can be used for the arms as well. 

• His right arm and leg are getting slightly stronger, but not 100% yet. 

Billy's Cerebral Status:

• He is still having good and bad days when it comes to his emotions. 

• He has exhibited a few more short term memory abilities since last week.  For instance, Angie Wynn made Billy a fresh cucumber and tomato vinaigrette salad and the next day Billy asked if she was bringing any more of that DELICIOUS salad.  He made the reference without anybody talking about the day before or any reference to the food.

• There may be a meeting someday with a neurophyschologist to assess Billy, but nothing is scheduled yet.

Billy has no pending medical issues that the doctors are looking at, for the moment.  His lack of sight is attributed to the brain injury.  His vision may or may not return, only time will tell.  His eyes are functional and are sending messages, however, his brain receptors are currently not receiving the signal.

Keep visiting and showing the love! 

Updates as of June 10-17, 2009: 

Here's the events that have occurred in the past week:

Billy's new Room - 529

Welcome back in town Billy Jr. and Joey Thursday the 18th.

Billy's Physical Status:

• Joe Sottini walked in front of Billy holding only his fingers to guide him as he did a short walk completely on his own. 

• No change in Billy's vision, still cannot process the signals from his eyes to the brain.

• In case you haven't visited to talk with Billy, which I know many of you are out of town at the moment, I just realized that I never mentioned how clear and concise his speech has been.   His articulation is perfect and his vocabulary is normal.  This is wonderful and exciting in that he can communicate what is on his mind clearly and audibly.

• He is doing occupational therapy to feed himself.  He shook an Ensure shake container and opened it without any assistance.  He is re-learning to hold utensils.  Billy is having to re-learn basic skills that we all take for granitite.

• His appetite is good and he has gained back the weight that he lost plus a few pounds. 

Billy's Cerebral Status:

• He loved seeing his dog Buddy.  Buddy was a stray that Billy rescued.

• He has exhibited a few short term memory abilities.  For instance Laura, his sister, had mentioned an interest in a piece of property in Florida.  The next day Billy asked if she had bought the property without anyone referencing the deal.

• He also mentioned to me how long he had been in the hospital (2 months) and how crazy this whole thing has been.

• Some statements he makes are a little off subject but at the moment his brain is thinking that thought and he verbalizes it.

Big Picture:  It's been mentioned to me by a couple of people in not so many words that they think Billy may have reached his recovery potential.  I can understand their concerns and their human emotions on this very, very interesting topic.  I know they all care very deeply for Billy as we all do.  Many have researched the internet to help enlighten their understanding and I applaud that kind of love and dedication.  We all want to have a medical and emotional conclusion, it's human nature for us who want things sorted out.  Billy wants things sorted out.

Here are my thoughts on it.   Brain injury is a topic we are all not very familiar with and doctors who study the brain say nothing is black and white.  Everyone is different in their recovery potential.  Trying to put a conclusion on a long term status prior to a year is cheating Billy.  It is unfair to label at this point. Since the beginning of this journey we have all been told this may take 6 months to a year or more to see Billy's full recovery potential.  That being said, it's been just over 9 weeks into a potential 52 week or more recovery.  If a week goes by or even two that don't show big improvements, that doesn't mean his recovery potential has been reached, it's potentially just a intermittent plateau.  

I personally struggle with the "what if" scenarios just as everyone who has a heart and brain would struggle.  However, I always calm those thoughts with two words.  TIME & PATIENCE. 

A Doctor's Neuro-insight - Sophia is reading a book written by Dr. Jill Bolte Taylor, a neuroanatomist.  Dr. Taylor suffered a stroke and has some amazing insight into the brain as it was shutting down, then died, and and then as when she recovered.  The video is about 18 minutes and it made me tear up.  What I took from it was that a brain trauma, whether via stroke in Dr. Taylor's case or anoxic as in Billy's case, is a very strange animal in what it affects on your physical and mental being and that it took her 8 years to recover...fully.  

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Please, keep visiting and showing the love! 

Updates as of June 26th, 2009: 

Billy will be coming home Monday the 29th!  University Community Hospital has done a wonderful job, but they need the bed, it's still a business.   The hospital tried to place him in a nursing home to continue the recover, but since Billy is uninsured, currently blind, and only 53, all but one nursing home rejected admitting him.   The family visited the home and decided it was best to bring him home.   Over the next 3 days we will be converting Sophia's condo into a home care facility.  We are professionally cleaning and sanitizing everything from the A/C duct system (A/C cleaning donated by Robin Knapp of ATB Industries 813-621-8090) to the floors (carpets cleaned by John Tilman and his company) and everything in between to create the safest environment for Billy.  We also are gathering necessary medical supplies and "child-proofing" the condo.  We will be installing rails to assist lifting and moving around bathroom facilities as well in appropriate other areas.   Floors will be cleared of "trip spots" and slippery bathroom and kitchen areas will be addressed.  We will cover all bases, then cover more as they become evident over time. 

This is no small task, but through the efforts of so, so many of the supporting members of our extended family, this will work.  If you feel you want to volunteer time, talent, or other to the cause please contact Sophia via email - massageinlutz@yahoo.com

Billy has been processed into the Medicaid system and is awaiting final approval.  We are taking all steps possible to get supplies under the Medicaid system, however, some supplies will have to be out of pocket.   Thanks to your generous cash donations, these costs will be covered.  THANK YOU!  THANK YOU!  THANK YOU!

If you would like to bring over any foods to welcome Billy home, please remember he is on a low sodium diet and basic heart smart guidelines should apply.

Individual caregivers will be giving occupational and physical therapy as laid out by the hospital guidelines.  Billy has started to brush his teeth and comb his hair with his dominant hand (right hand).  He walks with little to no assistance for short periods before he gets tired.    He is making nice progress at times and then he seems to stay at a plateau for days.   In a nurturing, familiar, comfortable place, he will be given the best opportunity to reach his physical and mental capability. 

On the flipside, if the home care plan cannot provide a continual safe and healthy environment for Billy OR if his condition worsens where he needs more medical attention, Billy would then be placed into a home nearby to provide those skills.  We all have the same goal in mind:

"WHATEVER IS BEST FOR BILLY"

This whole adventure will be a work in progress that will evolve with Billy.

Updates as of July 4th, 2009: 

Billy came home Monday, June 29th! 

The transition to home care went perfect!  Billy has settled in beautifully.  The first week was mostly tweaking the condo to make sure Billy would be safe and comfortable. 

Jeremy and I have been giving Billy his physical therapy to increase his range of motion and strength.  He certainly has his drive and determination to achieve all his physical goals.  If you ever played sports with him or worked out in the gym with him, you know he would always give 110%...he is now giving 120% to his physical therapy!

Sophia is working on his occupational therapy to get Billy closer to being independent on daily tasks, such as brushing his teeth, combing his hair, feeding himself, and getting to the bathroom when needed.  Kathy and Laura have rented a condo in the next building in the Fountains and have been instrumental on sharing the load of care giving.

If you feel you want to volunteer time, talent, or other to help out, please contact Sophia via email - massageinlutz@yahoo.com  If you believe in prayer, please pray for Billy's vision to come back.   If you would like to bring over any foods, please remember he is on a low sodium diet and basic heart smart guidelines should apply.  If you have had positive experience with a neurophyschologist and would like to refer, please contact Sophia.

This whole adventure will be a work in progress as I've said before.  Having Billy at home where he is receiving all the love and nurturing has been very rewarding for Billy and everyone involved.  

"Born on the 4th of July"

Happy Birthday MOM!  Love, Steve and Deb

Updates as of July 7th, 2009: 

The first week home was uneventful, which is exactly what we wanted.  We tweaked Sophia's condo to use the space efficiently and create the safest environment for Billy, while making it a comfortable place for people to visit and hang out.   Deb and I purchased a TV and mounted it on the wall.  Sophia asked me to move the computer with internet into the main area for friends to use if they wanted.

Jeremy has moved into the adjoining studio to help Sophia with the caretaking.  Kathy and Laura are in building 3 next door.  The "Level 1" caretakers are in place and sharing duties to deter burnout.  What a great team!!

Billy's eyes are the same, but we are hoping like everything else, they recover.  The day he regains his site, which I know will happen, I'm buying a keg and everyone will be invited!  His speech is still excellent and his short term memory is getting slightly better.

Keep praying for his recovery and being supportive of the caretakers.  Anyone who has ever made the decision to become a caretaker and give the love and support to a fallen comrade, family member or acquaintance -  they are truly heroes in my book!!  Those who support caretakers when they can are just as important!!  Keep the love going!!!