Celebrating Mother Knows Best

By Jean Grandizio, John Grandizio, and Antonia Demas

John & Jean

  • Jean’s Story
  • Nutrition Made the Difference by Antonia Demas
  • John’s Speech at Hopkins

This is a story about the amazing healing powers of whole foods and a mother’s love. The story begins almost 20 years ago with a life-threatening accident that changed the course of John, and his mother Jean’s life, forever. Jean’s fierce determination, steadfast advocacy, and her intuition to give her son healthy foods made it possible for John to defy the odds and recover from what doctors said was a hopeless case. A turning point in John’s recovery was when his mother finally got permission to put real foods in his feeding tube. Read about this miraculous story from the perspective of Jean, John, the nutritionist Antonia who made the soup, and two of John’s doctors. We offer this story in celebration of the love and perseverance of John and Jean, and as a call to action to advocate for change in hospital nutrition and the use of whole foods as medicine.

Jean’s Story

You never know what a day will bring.  This one began like all the others.  We woke, washed and dressed, and left home as we always did; John to the last weeks of his senior year in high school and me to work.  I remember that I left work early that afternoon to take John for his physical examination, the last piece needed to complete his acceptance at Alfred State where he would start the new chapter of his life in the fall.  Afterward I dropped him at a friend’s house.  We had the usual discussion about how and when he’d get home, and said, ‘love you’ and ‘love you too’.   For a very long time, I would get great comfort from having uttered those words.

Because that day, June 14th, 2004, would bring a challenge we could never have imagined when we left our house that morning.  That day I received the phone call every parent dreads – there had been an accident.  Coming home with friends John had fallen from the back of the pickup he’d been riding in.  An ambulance had been called.

He’d hit his head on the pavement.  No other broken bones or even many scratches.  I arrived as the EMT’s, many of whom we knew, were discussing how to lift him into the ambulance without causing further trauma.  With that delicately accomplished, it was decided to air lift him to a nearby neurological trauma hospital.  The nightmare had begun and in all the years since, the image of my young, strong, healthy, going-off-to-college-soon son lying on the road in a pool of blood, has never left me.

With the help of people at the scene I was driven to the hospital and in an almost out-of-body fog I managed to call John’s Dad and my family to tell them what happened.  Everything seemed dreamlike: neighbors and friends appeared and sat with me to await a prognosis.  Family members arrived and the story of the accident to that point was re-told.  I remember staring at a plate of food that someone had brought for me.

The surgeon emerged from somewhere down the hall, and we learned that John had suffered a Traumatic Brain Injury and that there were two crucial surgeries needed almost immediately, with life-or-death possibilities.  Each surgery was hours long and the waiting was almost unbearable.  I prayed for the strength to handle whatever happened.  He lived through both the surgeries.

But would he regain consciousness, would he have brain activity, would he know who he was and who we were?  More agonizing waiting, and then several days later he opened his eyes.  He looked like a prize fighter with a bandaged head, purple swollen eyes and tubes going everywhere, but he knew who we were.  He could see, hear, feel and move his body, although more slowly on the left side due to a stroke that had happened sometime after his head injury.  The first time his brother entered the room he excitedly attempted to sit up.  He wasn’t able to speak because of the respirator, but he was alert and seemed to understand all that was happening around him.  He passed his daily ‘neuro’ tests, responding with movement when asked by the surgeons.  The hospital Physical Therapists helped him sit and then stand next to his bed with little assistance, even while still intubated.   He signed “I love you” to me. The nurses were calling him the miracle boy.  I could breathe again.

When the bandages came off his head, we could see what had been done to alleviate the swelling caused by the accident and the surgeries.  Two large pieces of his skull bone had been removed on both sides of his head.  His scalp was intact but with a large suture line, ear to ear.  Eventually as the swelling went down, his scalp over the areas with no skull bone collapsed in.   He was weaned off the respirator.  In the first days he had been fed a milky looking substance, suspended from a bag, through a nasal tube. Then the nasal tube was removed and a Percutaneous Endoscopic Gastronomy tube, a ‘PEG’ tube was surgically inserted into his stomach, to allow the feeding of a prepared canned substance.  This was poured into the suspended bag and continuously drip fed through the PEG tube. He was cleared to be released and was transferred to a rehab hospital on the other side of the state.  And I was allowed to accompany him and stay in his room there.

That early hopeful recovery didn’t last long, however.  As the first weeks passed, he began to have contractions and uncontrollable muscle spasms that were painful even to watch.  His left shoulder seemed to be attempting to dislocate from its socket and his legs and right arm shook.  He had a look of agony on his face.  When I asked why this was happening, I was told it was due to the head injury. To remedy this, medications were prescribed.

He began having infections, from his PIC line and catheter, and pneumonia caused by lungs weakened by inactivity.  He contracted staph infections, pseudomonas, and C-diff, a virulent type of diarrhea; infections that can be caused by ‘super bugs’ found in hospitals. His immune system seemed non-existent.  It was explained away as due to the head injury.  More medications were prescribed.

As part of the routine of the rehab, feeding was on a rigid schedule and needed to happen quickly to accommodate the rest of the day’s activities.  To accomplish this, the canned liquid nutrition was pushed into his PEG tube using a plastic baster-sized syringe, instead of a slow drip from a suspended bag.  The syringe was filled, then inserted into his PEG tube and quickly and totally plunged.   He often threw up immediately, including the dose of meds he’d received prior to his ‘meal’.   If John ‘lost his lunch’ due to the quick transfer of can to stomach all at once like this, he would not be fed until the next scheduled time, nor could he receive another dose of meds to replace what just came back up, for risk of overdosing.  He could ‘lose’ the next meal also, and the next dose of meds, and could go quite a long time without the food substance or full medicine doses.

Several times he contracted aspiration pneumonia; a type caused by foreign material inhaled into the lungs; in this case some of his vomitus.

This seemed insanity.  No one eats like this; no one eats an entire meal of any type in under a minute!  I pleaded that this was illogical and causing more harm than good.  I was told John would adjust to this routine and that it was important to keep to the schedule.   I was told that his inability to absorb nutrition quickly like this was due to the head injury.  Before the accident, my son had been a weightlifter and was captain of his cross-country team.  He was muscular, strong and a healthy eater.  But now his weight dropped to 80 pounds.  His face became gaunt, his body bony without any muscle tone, and you could count his ribs.

It was about this time that John had his first seizure.  More medications were added to his already hefty regimen.  At its height, there were 17 different medications coursing through his blood stream.

His awareness seemed to have faded as well, and he spent more time sleeping.  When he was awake, he was not as able to purposefully move as he had in the beginning.  He began to fail his daily ‘neuro’ tests.  Even still, he showed evidence he was aware in small ways that his Speech, O.T and P.T. could observe. The therapists urged me to advocate for John’s skull bone pieces to be replaced, as had been promised after swelling was no longer a concern.  They explained that since brain tissue has no skeletal structure of its own, the skull provides a ‘house’ for this gelatinous cerebral mass, creating an anti-gravity space that the brain tissue can expand into.  Without this protection the brain, in effect, collapses onto itself.  They hinted that John couldn’t begin to recover with his brain unable to expand to its functional size.   I began to wonder how many of his issues were the result of this condition, caused by the head injury initially but perpetuated now by the method of ‘care’.

The hospital where the initial surgeries had been performed, and where John’s bone pieces were being kept frozen for replacement, told me it was not their policy to replace the bones until six months had passed.  I learned that this wasn’t procedure everywhere, so I began to call every trauma hospital in the state capable of this surgery.  Because of his recurring infections and other medical issues, however, no hospital would agree to take this task on, or even agree to transfer him to wait until his condition was stable.

And since replacing John’s skull bones was described by our insurance company as “cosmetic elective surgery”, no hospital was legally compelled by what is considered medical need to perform this surgery.  Due to that insurance loophole and the delicacy of the surgery, the many hospitals CEO’s I spent countless conversations with would refuse help, explaining sometimes rather callously that they had to be mindful of their mortality ratings.  That score, the low reimbursement to the hospital from our insurance and the length of time John would occupy a bed seemed to be the only important considerations.  All my conversations ended the same; I had no financial or legal recourse.  I’d replace the receiver on the waiting room pay phone and try to get back to our room before I’d fall apart.  Hospitals are businesses first and foremost and decide who is helped and who isn’t by crunching numbers.  It was a bitter realization.

It seemed we had slipped into an upside-down universe; our old lives and what I’d thought was reality were now only bitterly painful recollections.  And since we were surrounded by strangers that only knew us as we were in this bizarre world, it completed the feeling of being hapless characters in an unending Twilight Zone episode.  But I couldn’t give up; John was in there and he deserved a real chance to recover.

I have no medical training; I have little knowledge of medicines and knew nothing about head injury.  But it seemed the problems John was experiencing were all caused by each other.  He needed the skull bones replaced to restore normalcy to his brain tissue and allow it to expand again.  This may help lessen or, in my wildest dreams at the time, eliminate the contractions and spasms.  It seemed that would also help with his cognition and his ability to respond and begin to be verbal.  And to get a date for that surgery it was necessary for John to be medically stable otherwise.  He needed to boost his immune system to fight off the diseases and infections that were holding him from the bone replacement.  Weight gain is crucial to health and vitality as well.   Proper weight would also help with the efficient dissolution of the meds into his blood stream, and again in my wildest hopes, could help reduce the amount of them or at least the doses required.

He needed proper, real, healthy nutrition for that to happen.  And he needed to be fed in a way that would allow him to absorb those desperately needed nutrients.  For me, from the very beginning of this bizarre experience, it always came down to food.

When John was receiving the white substance through a nasal tube right after the surgeries, it reminded me of milk.  It’s interesting how thinking and behavior can change and get very clear when life gets basic and raw.  In my former life on the other side of the looking glass, I was quiet and reserved.  In this paradigm, however I didn’t hesitate to ask anyone and everyone about that nutrition.  Perhaps I never asked the right person, but I was never told what was in it.  I found it incredible that the contents of his nutrition were regarded with such insignificance, and that it was odd that I would ask about it or care. (In one of my bolder moments I even proposed replacing that substance with mother’s milk!  In my thinking then, that would have been the best possible nutrition for a brain and body that had been brought back to almost an infant status, in desperate need of gentle and complete nutrition.  As you would think that suggestion didn’t go far.)

When he began to get the canned nutrition through his PEG tube, I asked about making real food and pureeing it.  That wasn’t allowed because of health and hygiene reasons, but I suspected it had more to do with insurance coverage.  I talked to everyone who would hear me, pleading to be allowed to feed John real pureed food.  I would sign releases and waivers, anything that would relieve the rehab from any responsibility.

I argued that I wasn’t suggesting anything strange or outlandish.  It was just food, what everyone eats, just pureed to flow through the tube.  I talked about food as healing and nourishing, boosting the immune system, helping weight gain.  I talked about food as comfort, even and maybe especially, to someone in John’s state of consciousness.  When someone makes food for others, well or sick, they put themselves into it; their time and their attention and their care.  That comes through the food too.

Older staff members told me that was the way it always had been in the past; food was cooked in the hospital kitchen and pureed.  Now it was more convenient and time saving to buy the canned nutrition, and that became the way it has to be. There were a few different types of this nutrition, but the basic recipe was the same:

Water, Corn Maltodextrin, Corn Syrup Solids, Sodium & Calcium Caseinates, Canola Oil, Corn Oil, Soy Protein Isolate, Fructooligosaccharides, Medium-Chain Triglycerides, Oat Fiber, Soy Fiber, Potassium Citrate, Calcium Phosphate, Gum Arabic, Sodium Citrate, Magnesium Phosphate, Soy Lecithin, Magnesium Chloride, Carboxymethylcellulose, Ascorbic Acid, Choline Chloride, Potassium Chloride, Taurine, L-Carnitine, Zinc Sulfate, dl-Alpha-Tocopheryl Acetate, Ferrous Sulfate, Niacinamide, Calcium Pantothenate, Manganese Sulfate, Cupric Sulfate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Vitamin A Palmitate, Folic Acid, Biotin, Chromium Chloride, Sodium Molybdate, Potassium Iodide, Sodium Selenate, Phylloquinone, Cyanocobalamin, and Vitamin D3.

Contains milk and soy ingredients.

What is that rule of thumb about ingredients?  If you can’t pronounce it you probably shouldn’t eat it?  It seems to contain a lot of different types of sugars, chemicals, and the actual foods listed sound very processed.  It had a bad smell and if some was spilled and not cleaned quickly it hardened, and became almost impossible to wipe up.  What was that doing to John’s body?

I would show the ingredients to anyone I could, wondering how this could be nourishing to someone so very injured.  No one well or sick outside a hospital would eat it, why was it standard procedure here?  I would repeat over and over how I would sign any document anyone wanted, to be allowed to cook real healthy food, puree it and bring it to John.   It was always dismissed as an inconsequential and odd notion.  No one took me seriously.

Our medical insurance allowed six weeks for recovery from serious life changing brain injury.  When that time was up, we spent some time in the hospital connected to the rehab.  John was already a familiar patient there, where he had been taken to recover from all the infections that happened at the rehab.  I was encouraged there by a number of the staff who took an interest in John.  Anyone spending time with him saw the signs of his awareness and I was reassured many times by the comments that, since he had shown such promise in the beginning, there was still hope that recovery was possible.

We could not stay there indefinitely.  Since our rehab time had already been used and would no longer be covered by our insurance, our only choices were nursing homes.  That was out of the question.   With the help of a wonderful nurse Jill, we found what we thought was a viable solution.  There was a rehab that, according to insurance descriptions, was designated as a nursing home.  They would accept John and it seemed the best choice.  The paperwork was completed with all John’s medical history and when he was deemed stable, he transferred to this nursing home.

For reasons never properly explained, and not because of the careful measures taken by the hospital, John’s meds were improperly planned for at the new facility.  We arrived in early afternoon, and throughout that day and evening, he missed several doses of several meds, despite my urgent efforts to remedy this situation.  This eventually resulted in heart rate and respiratory distress that landed him in a nearby ER at two A.M.  Regardless of my desperate attempts to communicate the actual reason for his problems; that he was experiencing a negative reaction to his missed meds, it was determined these were ongoing issues.  He was prescribed heart medication and was put back on a ventilator!

The only good news was that fortunately it was our legal right to refuse to transfer back to the ‘rehab’ I’d lost all faith in, and were allowed to remain at this hospital.  However, this meant different Doctors, nurses and staff.  I made many efforts to explain our journey up to the present, but it seemed to fall on unsympathetic ears.  Many times I felt discounted because I had no medical training and I was only his Mother.  And if I would relate why initially he had been dubbed the miracle boy, I was seen as a distressed and deluded Mother.  We had been through so much by then that if felt ages ago there had been so much promise.  In my darker moments I even began questioning it myself.

I think it’s important to mention that at no time were any of us in favor of keeping John alive if there were no hope for any type of recovery.  He was loved too much to commit him to a non-life of endless infections and medicated unconsciousness.  But he was in there, and he deserved the chance to do something with that.  Even through all the spasms, contractions, weight loss and infections, he would indicate by some means that he was still aware.  Sometimes it was just an asked for eyebrow wiggle, but it would be enough to keep us going and knowing we were right.  It was imperative that he was given a real chance to recover.

The new medical team only saw John as he was when he arrived at their facility.  He presented as an emaciated, very medicated young man with a sunken head, seemingly in a coma.  And to them, he also had heart and respiratory conditions.   Different doctors specializing in different fields would make their rounds with John, each only noticing the one part of his body they were trained in.  It was like the fable of the three blind men describing an elephant, each confidently sure he could describe the totality of the creature based entirely on the one part of the animal each man happened to touch.  It seemed an unfamiliar concept to see the problems together in a holistic manner that could possibly point to a connected solution. To me that meant real food and the skull bones replaced.

John couldn’t begin recovery without the skull bones and while some neurosurgeons I’d spoken to had agreed to perform the surgery, no hospital administrator would admit him.  But even if we would have gotten the double go ahead, John’s physical condition never remained stable enough for the transfer.  And I couldn’t get the OK to feed John the healthy nutrition to make that happen.  It was an untenable situation.

I began my telephone quest for the bone replacement.  And once again I began my battle for real food, pureed for the tube, that I would provide and give John myself, involving no staff.  Once again, I offered to sign for all liability for any issue or outcome, clearing the hospital of any accountability.  This had become my resolute mission.  Because while I couldn’t perform neurosurgery, I could make wholesome food.  But once again it was deemed inconsequential and dismissed.

We had learned early on that since John couldn’t speak or push the call button, he couldn’t be left alone.  I was the care provider during the week and John’s Dad would spend weekends with him, allowing me to go home and sleep in my bed again.  We lived several hours away in the country and in a very close-knit small town.  I often thought of those trips home as returning to the Shire. My back door was unlocked as it had always been. So, my weekends ‘off’ I would come home to my kitchen table covered with cards, flowers and gifts, and the refrigerator filled with food. It always brought me to tears. I was filled with gratitude; rejuvenated and strengthened and feeling surrounded by people that knew who we were before this nightmare began.  It restored my soul.

The amazing fund raisers that the town organized allowed me to leave work and be with John full time; without that financial help it wouldn’t have been possible.  This outpouring of concern by our community and friends and the constant support of my incredible family with their continual visits, phone calls and cards were the only things that made this time bearable.  John’s Aunt Barb was a tireless ally in the struggle to get the skull bones replaced.  She called and visited hospitals to advocate for this surgery, and rented a place near the first rehab to allow others to stay and visit.  I will never be able to accurately express my gratitude for all the love and help along the way.  Any success that happened was only possible because of all this support.

But back in Mordor, life consisted of hours spent watching my son’s vital signs and moving his legs and arms in an attempt to keep him flexible, with quick runs for food or coffee in between.  Many hospitals have cut back on staff numbers, making the percentage of nurses and aides to patients very strained.  Spending as much time as we did in these facilities, I became very familiar with staff, and with some very friendly.  They were glad of my extra help and taught me many things about basic patient care.  I began to be John’s unofficial aid, learning to give him sponge baths, how to move him in the bed to change the sheets, and that to avoid bed sores he needed to be re-positioned every two hours round the clock.

Immediately after the initial surgeries, when John’s recovery seemed so certain, it was suggested I provide lots of memory stimulus for him.  I continued those efforts by bringing photos to our hospital room and playing his favorite music CD’s.  I think that effort to create a homey and relaxed atmosphere also brought out the best in some of the staff.  Nurses, aides and therapists would come to our room just to talk when they had a moment.  There were some who practiced massage and Reiki and would quietly suggest they would do this for John.  And recommendations to get John home were discussed.  Not to a hospital closer to our home, but to our own house.

Seriously considering this idea, I began making inquiries to agencies regarding the feasibility of this undertaking.   I connected with a Service Coordination agency in our town, and we began working out the details of this type of transfer of care.  Donna, the hospital Social Worker, was invaluable to making this happen.  She organized the orders for a hospital bed and other equipment that was going to be needed, as well as the scripts of all meds to be available from a local pharmacy.

The nurses began to teach me how to read and use the medical sheet to keep track of the times and doses of his numerous medications, as well as how to cut and crush pills if necessary and administer them into his tube.  They showed me how to give him his daily shot to prevent blood clots, and what sterile procedure was.  After I had been taught many times, I began to administer the meds and shots while the nurses looked on.   John had been weaned off the respirator but was re-trached as a precaution for his ‘respiratory’ issues.  The respiratory therapists showed me how to suction and clean his trach, and they would watch me perform these duties, giving me tips and helping me perfect the procedure.

I had learned that there was an alternative to a catheter, called a condom catheter.  Aptly named, it is a rubber sheath that fits over the penis with an opening that connected to the urine bag tube.  This needed to be changed daily and the urine bag emptied when full.  There was a disposable waterproof pad under John that was changed after bowel movements.  I became proficient in all these procedures.

Lastly, I was instructed in how to operate the pump that slowly transferred the canned nutrition from the bag to the PEG tube and how to unclog the tube when needed.  It was my fervent hope that once home, I could begin to feed him real food at last.

There were changes that needed to be made to our home.  A ramp was needed to get the bed ridden John into the house, the dining room emptied to allow for the hospital bed and his other equipment, and a generator installed to provide constant electricity for John’s needs in case of a black out.   These huge tasks were completed with help, again, from wonderful neighbors and community members.   All was ready for the transfer home.

We brought John home December 23rd, 2004; six months since that day in June that changed our lives so completely.  All was in place for him except nursing care.  The nurses we thought we had in place found other positions, and the round the clock care fell on the family in the beginning.  Even after we were in our own home, no Doctor would sign off on feeding him anything but the canned nutrition.  In hindsight now, I wish I’d gone against those orders and did what I felt was the best thing.  I think the enormity of caring for him at home took a toll on my judgement.

I renewed my efforts to have the skull bones replaced at the original hospital, since now we had met their 6-month time requirement.  I left numerous messages for the surgeon who had performed the initial surgery, and for the hospital CEO and eventually spoke to both.  It became clear there was no intention of transferring John back to this hospital for the bone replacement procedure now or at any time in the future.

John still wasn’t gaining weight and he remained immune-compromised.   He became a frequent visitor to the local ER for infections again.  At one point while in the hospital he began to run an extremely high fever.  I have always wondered if this was caused by antibiotics that did not mix well with his other medications, as it was decided rather hastily by a group of doctors talking quietly in the hallway to airlift John to another hospital that had an infectious disease doctor on staff.  Unfortunately this person was on vacation when we arrived and staff there did what they thought was the only alternative; it was decided to stop all his medications, completely and at once.  I was so adamantly against this option, remembering our experience with his reaction to missed meds a few months back, that I needed to be physically removed from the ER and wasn’t allowed back in for several hours.

In a matter of hours John reacted severely and negatively as I had thought he might, seizing until an IV of Ativan was begun.  After that harrowing consequence, the constructive upside to that decision was that now John was virtually med free, and it could be determined slowly which ones to return to his regimen.

The stay in this ER was most uncomfortable.  The room itself was dismal with a window that looked onto a cement wall, allowing very little natural light in.  And once again we were surrounded by unfamiliar staff who had little positive hope for John.  The surgeons there also refused to consider the bone replacement.  It was a particularly dark and depressing period, brightened only by family and friends who made numerous trips to visit.

During this time, I had been told of a neurologist in a hospital closer to home that may be sympathetic to our predicament.  After many phone calls and arrangements, John was transferred to this facility.  He began EEG testing to hopefully determine the type of seizure John experienced occasionally, and meds were begun to remedy this situation.  Sadly, our hopes to schedule bone replacement surgery once again fell through, and I began the process to bring John home again.  This time we were able to secure a wonderful staff of nurses and care was easier, allowing me to pursue the bone replacement in earnest.

It was now almost a year since John’s accident, and we had been in and out of five hospitals across the state, and once in a neighboring one.  I amassed all his medical records and x-rays, armed myself with a synapsis of his experiences along the way, and met with Dr. Barry Pollack, the Neurosurgeon at our local hospital.  I had come prepared to argue and plead my case, but about halfway through my discourse, the doctor stopped me to say that all arrangements had already been made and that he intended to perform the procedure to replace the bone pieces!  I shook his hand and hugged him and felt I finally saw a faint light at the end of our horrific tunnel.

The neurosurgeon decided against using John’s own skull pieces since it had been such a considerable amount of time that they had been in dry freeze, with too many chances to become contaminated.  With precise computer-generated measurements, the two pieces were created out of a type of porous plastic that would allow tissue growth around and through them.  The construction of these pieces was not covered by our insurance, as they were defined as cosmetic, and as can be surmised, were very costly.  I had been miraculously surviving on the fund-raising monies but did not have the ability to pay for this as well.  I wrote a letter to the company manufacturing the pieces, explaining our predicament and asking about a payment plan.  To our incredible relief, they opted to do the work ‘pro-bono’.  It seemed that this was meant to be, and that all the hard work to get to this point was finally to have a successful conclusion.

Miraculously, John remained infection and fever free. The date for the surgery arrived, thirteen months to the day of the accident.  Once again, I was surrounded by family and friends in the waiting room, but this time the mood was significantly lighter and more joyous.   The operation went very well and after a few weeks in the hospital for observation, John was released to return home.

The changes in John’s awareness began slowly.  It was becoming more obvious, even though his eyes were still closed, when he was awake rather than sleeping. His reaction to things around him was at first subtle but increasingly noticeable to all involved with him.  He began to open his eyes and was definitely seeing what was happening around him.  It was a considerable procedure and took me and our wonderful day nurse Anya a lot of muscle to get John from his bed to his hospital chair, but he was slowly able to sit up comfortably for short periods of time.  We were even able to wheel him outside onto the back porch, and I remember him chuckling while watching our dog Rory play fetch with a stick on the lawn.  Anya and I looked at each other in disbelief!

Mike, the PT that was contracted to come for sessions to our home noticed a change in John’s attempts to engage with him as well.  Our incredible overnight nurse Karen reported similar occurrences, when she knew that John was managing to subtly communicate his need to be repositioned or that he was uncomfortable.  It was exciting and promising reactions.

During this time, our good friend Phyllis, one of the many people who were aware of my goal to feed John pureed food, told me about a woman in our town, Antonia Demas.  Phyllis knew her because of her work in her daughter’s class in our town’s Elementary school.  Antonia, a nutritionist with a PhD from Cornell University, presented lessons to children about the importance of healthy foods, with a wonderful hands-on teaching curriculum designed to help kids learn about the nutrients in vegetables in a fun and memorable way, with the hope of beginning healthy eating habits that would continue throughout their lives.  Phyllis thought Antonia would possibly be the person to develop a properly balanced and healthy recipe for John.

In the meantime, I was hard at work convincing John’s local MD to approve the change from canned to real food.  I attempted to enlist the help of an area alternative MD, but even he was reluctant to sign his name to such a change as well.

John’s change in awareness was relatively short lived, however.  Some days he seemed to have a pained look on his face and that he was attempting to curl his knees close to his stomach.  Lab work and other tests revealed nothing, but his ability to sit up declined and he seemed to be shutting down again.  The cause of the problem was soon identified; very early in the morning on my weekend overnight shift he began to vomit excrement.  An emergency trip to the hospital revealed an intestinal blockage that required surgery.  It was successful, but after that John no longer responded as well or seemed to come back to that promising recovery after the bone plate surgery.

Bouts of infections and mysterious fevers started again, and care for him became extremely stressful and draining.  After many heart wrenching discussions with John’s team of doctors, it was determined that everything possible had been done and the head injury had proven to be too much to come back from.  With a prognosis of six months to live, he fit the description of a Hospice patient.  The doctors signed off on his admittance to the Hospice center nearby for palliative care.

It was an agonizing decision to transfer to the center.  Thankfully the building itself and the surrounding grounds were comforting and beautiful.  The very small ratio of ‘resident’ to staff there was a wonderful change from previous institutional settings we’d been in, and accommodations were made for me to comfortably stay with John in the final part of our journey.  The philosophy of Hospice care is to make each person as comfortable as possible, to ‘go out in style’, and the warm and competent care of everyone we encountered was apparent.  Since the rules were very wide open here, I again proposed my desire to feed John real food.  Now considered to be a palliative care request, it was finally granted.

I met with Antonia Demas in her home.  It was a cool fall day, and the warmth from her wood stove made for a relaxing atmosphere to talk about my son.  I relayed a shortened version of our story, saying that I would really appreciate any help she could give me to create a well-balanced meal we could puree for John’s peg tube.   I told her that it was to be John’s last meals, but that it was important to me that I could nurture him this way.  I remember saying that I had breast fed him when he came into the world, and I wanted to at least provide good nourishment as he left us.  She agreed to help, and we made future plans to begin.

I was able to buy a Vitamix at a reduced price through a program that company has, to provide these machines to people with a medical need.  I bought a very large commercial sized soup pot, and some plastic tubs to hold the soup, and we were ready to go.

Since I was at Hospice with John the majority of the time, Antonia graciously and generously agreed to do the shopping and the cooking.  It was decided that vegetable protein in the form of soybeans would be the most appropriate for John’s system deprived of real nourishment for so long, complemented by health giving vegetables, and as organic as we could afford.  I thought of it as rainbow soup; every color of vegetable available was used in the recipe.  We had to experiment with the consistency of the puree to allow the mixture to go down the tube. We soon realized that it would never flow smoothly through the machine operated pumps tubing so the syringe method would be necessary.  But this time it would be administered slowly!  And then we began the change.

We were in uncharted territory, so we decided to go cautiously, exchanging one can’s amount of nutrition for the same amount of soup every day.  At that time John was taking 8 cans of nutrition a day, so we substituted one can a day for a week, then two each day for a week and so on, until he was eating only soup.

The changes in John started long before the complete diet switch, however.  His bowel movements became more formed and normal, and he seemed to be putting some weight on his still emaciated form.

It is procedure for non-verbal tube fed patients to check for residual content in the stomach before administering more food via the tube.  This is done with the plastic syringe inserted in the tube fully plunged and then slowly pulled back.  Any liquid that would be pulled back into the syringe would be measured and if there was too much ‘residual’, feeding would wait until the stomach was empty.  This happened many times with the canned nutrition, as absorption took longer.

With the soup however, he was always ready for more.  It was as if his body was consuming it as quickly as it could, every cell in his body extracting all the nutrients it had been starving for.

It also became more obvious, to all caring for him, when he was awake even though his eyes were still closed.  Once again, he would smile when something funny was said and there just seemed to be an alertness about him.  And then he started opening his eyes.

To attempt to determine whether this was an involuntary response we asked John to blink his eyes, and he did.  He was still unable to move his body when asked, so this was a definite change.  We devised a simple way to communicate; one blink for yes and two meant no.  This was a momentous breakthrough!  We could ask John simple questions and it felt wonderful to have made a connection this way.  However, it was tedious sometimes determining what was an answer or just an eye blink.

I will always remember the evening everything changed.  Peggy, the nurse on duty, and I were talking about this issue.  Peggy looked at John and said, “if only you could nod your head”.  He smiled, slightly lifted his head off the pillow, nodded and placed it back on the pillow.  Peggy began to cry, and I repeated the question to John to make sure it wasn’t just a fluke.  He nodded again.

By the next day he was able to shake his head for no, and we were in business!  Not only could we ask him if he was in pain, hot or cold, or uncomfortable, but anything phrased in a yes or no answer format could be ascertained with certainty.  It all took off from there.

As the days went by, with more soup making him more alert and stronger, we began to ask more complicated questions.  Wondering if he could recognize colors, I asked if the white shirt I was wearing was brown.  He shook his head no, and we went through the colors until he could nod yes to white.  He recognized colors.  I did the same experiment with the number of fingers I was holding up for him; he knew numbers.

Then we wrote a simple yes or no question for him and presented it for him to read; were the lights on in the room?  He read the sentence, looked at the lamp and nodded the correct answer.  He could comprehend written word!

At the same time his cognitive abilities were becoming evident, he worked on being slowly able to move his right hand and then his arm.  We were able to lift him into a wheel-able chair (happily getting more difficult the more weight he was gaining) and his capacity to sit up increased each day.  I began working on his legs when he was in this position, until he was able to push down slightly with his feet.

He became so able to move his right arm that we devised a signal he could give us indicating when he needed to urinate.   That finally eliminated any type of catheter and was the beginning of him initiating communication with us.

Since John clearly no longer fit the description of a Hospice patient we contacted Dr. Andrew Morpurgo, Physiologist in charge of the local rehab.  He was very familiar with John’s history but not aware of his recent and incredible changes.  He came to see him at Hospice at my request, but I think it was only out of respect for what we’d been through.

I explained the changes that had happened with John, but I felt his reluctance to believe what I was saying, possibly considering it more wishful thinking than fact.  While he and I spoke about John in the dining area of the Hospice house, the nurse and aide got John up in the chair in our room and ready for company.  As we walked down the hall, I remember Dr. Morpurgo delicately and sympathetically suggesting good nursing homes and other long term care options for John, gently indicating there was nothing to be done for him anymore.

We entered the room to find John looking even more aware than I had ever seen him.  The nurse and aide must have given him a fantastic pep talk about how important it was to be at his most alert for this very important meeting!  I could tell that Dr. Morpurgo was impressed by this as well, and then we showed him how we were able to communicate.  He asked John several questions and his interest grew with each correct answer.  I then told him John could read and Dr. Morpurgo wrote a simple question which John comprehended appropriately.   Then the Dr. did something none of us had tried; he asked John to try to say the word cat.  It was a very faint whisper, but the attempt was made!

At this point Dr. Morpurgo began thinking aloud, planning how to free up one of the rooms in the rehab.  He finally looked at me and said it would take a few weeks, but John would be admitted as soon as possible.  His prognosis had changed with these improvements, and he was insurance eligible, once again, for a rehab placement.  We shook hands and he left, a convinced man.  The nurse, aide and I danced around John, praising him for his incredible performance.  Soon after, John left Hospice for the rehab and began his journey back to recovery.

Fortunately, Dr. Morpurgo was very interested and agreeable to the soup being continued at the rehab.  I was able to take over the shopping and cooking duties, and we purchased a small refrigerator that we were allowed to keep in our room for the soup.  Antonia remained closely involved as we tweaked the recipe to change up the fiber and other nutrients.  The hospital nutritionist was on board with it also, doing blood levels to confirm the nutrition John was receiving.  His recovery began full swing there and continued after we moved back home.

I could write volumes about the small and huge changes that happened and continue to happen with John.  He started communicating with a word board, pointing to letters to form sentences, until he began to talk.  The trach was removed, which helped with sound production.  After many months of swallow testing, he graduated from the PEG tube to eating by mouth.  His ability to sit up increased to all day in the wheelchair, and now he is able to stand and walk with assistance.  Fast forward to today finds him working part time and completing his second degree at TC3, our local community college, toward the certification to be a personal trainer’s assistant.  He’s working hard on walking independently and functionally and regaining more use of his left hand; both possibly more the consequence of the stroke rather than the head injury itself.  John’s determination to endure all that he did and continue to work on his recovery is a constant lesson in the ability of the human spirit.  He hates to be called an inspiration, but he is.

The many people we have met and continue to meet that have contributed in immeasurable ways cannot ever be properly thanked for their incredible efforts.  Doctors, nurses, aides, therapists, social workers, teachers including a wonderful music teacher, alternative healers in many forms of massage, herbal, homeopathic and essential oil remedies and acupuncture, as well as a week at a Tai Chi health center and many profound Native American healing ceremonies, prayer groups from many different faiths, service coordinators, our loving family, friends and our community itself.   All have our eternal appreciation.

The bulk of the recovery, however, all began with the soup.  Without the miraculous healing nutrition of real food none of this would have been possible for John.   Antonia Demas’ help cannot be valued enough.  At a convention coordinated by Antonia in 2008, at Johns Hopkins in Baltimore, MD, John delivered a speech to an audience of professionals gathered to discuss the importance of nutrition in many areas, ranging from the menus served to school aged children to the impact of food production on the planet.  Antonia and I helped John stand at the podium and speak about the crucial importance that proper nutrition played in his recovery.   He relayed a little about his experiences before and then after his diet contained real food and ended with the hope that a serious discussion about whole food nutrition as medicine can begin in earnest within the medical community.  He received a standing ovation.

Antonia and I write this today with that same wish.  We hope that John’s experiences serve, in some small way, to help others whose health may also be improved by incorporating real food nutrition into their routine.  And that the medical community will begin to consider, in earnest, the healing benefit of a wholesome real food diet.  Thank you.