Showing posts with label alcohol block. Show all posts
Showing posts with label alcohol block. Show all posts

Friday, September 20, 2013

Our Day In Hell Part 11 - Chronic Pain

During India’s 11th year, she began to show signs of chronic hip pain.  Her condition became progressively worse over the next twenty-four months.  Viktoria and I did everything we could to prevent the problem from becoming worse but Mother Nature had other plans. 

Because of her worsening condition, we took India to visit her local Pediatric Orthopedic Surgeon.  She had multiple x-rays taken and the results were chilling.  The tops of India’s femurs had grown perfectly straight versus the natural angle placing the ball into the hip socket.  There were no hip sockets and the balls of femurs were worn down to virtually nothing; just jagged edges. 

India's pain rapidly became unbearable; every movement came with a grimace and moan. This was crushing for me as her father, to watch my child in so much pain and not be able to take it away. She’d wince with every move, often bringing a scream to her mouth or tears to her eyes.  I’d regularly have to hold India in my lap, while I tried to sooth her.  She’d sit there holding onto me with her one good had saying “owie daddy – help me”. 

India’s Orthopedic Surgeon told us that our only real option was to open up each of India's femurs, saw of the tops and stuff the void left behind where the bone was removed with material to try and prevent the remaining bone from piercing through her muscle and skin.  This invasive procedure would have taken up to a year for India to recover and virtually guaranteed a lifetime of pain and discomfort. In addition, my little girl was so fragile; I didn’t think she’d have good odds of surviving this surgery.

My wife Viktoria and I did a massive amount of research to find alternatives and the best doctors in the world that could help India. We discovered that some of the finest physicians out there for India’s condition are located on the east coast of the United States.

India and I immediately flew across the country to meet with these cutting edge physicians and get their suggestions on how to help my little girl. The doctors suggested 3 procedures that were relatively non-invasive and outpatient.  We booked India’s surgeries on the spot for the following month, and then flew home.

Just after India and I returned from the east coast, a lump was found in my chest that appeared to possibly be dangerous.  My doctor immediately scheduled surgery to remove the mass.  My operation took place on a Wednesday; it took about 2 hours to remove the growth.  Two days after my surgery, I began to have substantial internal bleeding. The doctor had to remove a large quantity of blood from my chest, leaving an impressive dent in my right breast.  Two days after that, I flew India to the east coast for her surgeries.  The trip to the eastern United States was rough on me as I had just been cut open, was black and blue, leaking fluids, exhausted and experiencing quite a bit of pain.  I had to constantly lift and maneuver India, her wheelchair and equipment throughout the trip on airplanes, shuttles, trains and all around airport terminals.  All the while trying to be gentile with India because of her hip pain.

India’s mother had flown the same day but on a different airline.  She told me that she didn’t want India to stay with her on the first night because she was tired from school and the long flight to the east coast; she needed her sleep.  Even though Veruca knew about my surgery and complications several days before and that I had also just finished a long flight, caring for India was out of the question for Veruca, she wanted a good night’s sleep.

I brought India to Verucas hotel room the next afternoon so that she could spend the night with her mother.  As I was leaving Verucas room, as usual, India began to plead with me to not leave her with her mother.  I told India that I loved her but she needed to stay with her mom. 2 hours after leaving India in Verucas room, I received a call from Veruca letting me know that India hadn’t let up on wanting to be with me and had become more adamant that she wanted to leave.  Veruca asked if I’d come get India and let her stay in my room, I happily agreed.

We arrived at the hospital the next day at 6:00 am.  I could feel India’s apprehension and fear, not to mention my overwhelming worries.  We were taken to the pre-operative room where I placed India in her hospital gown and onto the gurney.  The nurse said that only one person could accompany India to the surgery prep-room.  India’s mother asked to be the one to accompany her.  Not wanting to make a scene, I agreed.  As they began to wheel India off with her mother in tow, India in a scared voice began to say “Daddy, Daddy”, reaching for me. I paused, foolishly thinking that Veruca would respect India’s request, turn back and let me go with our child, but this didn’t happen and I was foolish to have expected it to have.

Several hours later, we were notified that India was out of surgery. We went into the recovery room and saw an all too familiar sight.  India was unconscious, swollen, her skin a grayish-yellow and surrounded by monitors and intravenous lines.  Her lips were dry, the sides of her head stained with yellow surgical Iodine solution, ears stuffed with gauze, blood seeping through.  The numerous bandages on her surgical points all had had red splotches.  I’ve been in this situation so many times with my baby girl, it’s difficult to describe how deeply painful it is for me to see my child in this state; regardless of the reason.  I find myself indescribably sad, anxious, helpless, physically exhausted and even angry.  This sweet little girl did nothing to deserve this, nothing at all.

When India was released from the hospital, she was very lethargic and drowsy; she looked terrible.  We took her back to the hotel to rest.  The doctor’s philosophy was to get the patient the hell out of the hospital ASAP to recover; hospitals are major incubators for infection.  Veruca wanted India to stay in her room the night she returned to the hotel.  India was in and out of consciousness as we got her set up in Verucas room.  She wasn’t looking any better and clearly had significant pain, enough so that Veruca suggested that she should stay an extra day or two in case India had to be hospitalized; Veruca was scheduled to leave the next day.  I responded that it might be a good idea; I felt the odds were high that India would have to be hospitalized.

The first night out of the hospital in Verucas room was extremely tough for India.  She was in a lot of pain and took a huge amount of care.  According to Veruca, she was up most of the night caring for India.  The next morning when I arrived, Veruca was packed and ready to go.  After a long night caring for India, she’d completely blown off our conversation about her staying a couple more days to help with our daughter.  She was leaving regardless of the possibility of India having to be hospitalized.  I didn’t say anything; I’d seen this narcissistic behavior from Veruca many times before.  When I confronted Veruca with this later, she would use the excuse that she had to get back to class, although her professors gave her all the time off she needed.  She’d also use the excuse that she had no money even though I offered to pay for her room and meals. 

Luckily, India didn’t have to be hospitalized.  Viktoria, India and I spent the next week in our east coast hotel room so that India could recover enough to take the long flight home.  It was a stressful, exhausting and a long week as India was weak and in pain most of the time; she required a lot of care.  We were able to take an afternoon drive with India to New York City to tour the Plaza Hotel. India’s favorite book and TV character is Eloise, who lives at the Plaza.  India had the time of her life, an ear-to-ear smile the entire time.  This was the first time India seemed like her old self in months.

The next day we flew home but unfortunately, and as usual, we were facing more of the same from Veruca and a much longer and tougher recovery for India than we thought.

Several days after returning, Veruca tried to put India back in school, despite my vigorous protests and India’s obvious physical state.  Veruca did send her to school but it lasted only one day. India spent the entire time asking her aide to hold her in her lap because she was in so much pain. The aide couldn't give my daughter this comfort because the school system said that it wasn't appropriate for the aid, who is a woman, to hold my 42 pound daughter and comfort her; it was a terrible day for India.  Fortunately, India got to come home to me that afternoon. 

India returned to my home in very bad shape.  She’d not been stretched as directed by the doctor and as a result was terribly stiff and in bad spirits.  She began to have exceptionally intense and painful contractures in her legs.  The doctor who performed the surgery on India had prescribed liquid Diazepam to control these contractures. He told us to not hesitate to use this drug when India’s contractures began. When I went to India’s medicine bag to get her the Diazepam, it wasn’t there.  I quickly contacted Veruca to ask about the Diazepam; I assumed she forgot to send it over from her house.  To my horror, Veruca proceeded to inform me that she intentionally kept the Diazepam and didn't want India using this necessary and prescribed medication.  After many attempts to gain access to the withheld prescription, I was forced to call the police.  After about 45 minutes, the police arrived at my house with India’s Diazepam. The policeman let me know me that Veruca was very difficult and angry that she had to give up our daughter’s medication. He went on to say that he couldn't understand why a mother would unilaterally withhold prescribed medication from her own daughter. India had to endure several hours of needless pain because of her mother’s personal beliefs, regardless of the impact on India; I was livid.

Because of Verucas past history of neglecting our children, her aggressive desire to place India back in school before she had healed from her 3 surgeries and now her refusal to provide our child with the necessary medication, I was forced to bring in an officer of the court.  Fortunately, the court ordered that India was to spend every day with me during her mother’s week every day so that Viktoria and I could care for her.  Veruca wasn’t happy about this and fought as hard as she could but thankfully lost the battle.

India’s recovery was brutal.  At times, she was in extreme pain.  She had bruises throughout her body where the surgeries took place.  The operation for her mouth caused a bad reaction, which resulted in a nickel sized bright white hideously painful sore that formed on the tip of her tongue, resulting in India not being able to eat.  Then India came down with a nasty virus that caused her to vomit every time we were able to give her smallest bit of food or drink.  And finally, she began to have horrendous nosebleeds.  The worst of which happened one morning before dawn.  When I went into India’s room to get her ready for the day, she was laying in a puddle of blood.  Her long beautiful blonde hair was knotted in black and red congealed liquid.  Her face was completely covered, including her eye sockets.  Her tongue was black from the blood that pooled in her mouth.  India’s ears were caked with the drying fluid and both nostrils were totally blocked with black blood clots.  It was a gruesome sight. It had visibly shaken her as she began to sob when I walked in the room, she grabbed onto me and said “Daddy” over and over while she cried.   

I picked India up and took her to my bathroom to give her a long warm bath and get her cleaned up.  When I lowered India into the bath, the water instantly turned dark red.  I had to fill and drain the bath three times as the water would continually turn dark red from the blood that came off her little body.  It took us over an hour to comb the blood clots out of her hair. 

At one point while India was soaking, I stood up, my reflection in the mirror caught my eye.  I was covered in blood; it was everywhere.  My chest was still horribly bruised, deformed and painful from my recent surgery. My skin that wasn't smeared with India’s blood looked sickly pale.  My body didn't look familiar to me, it looked frail and old; I’d lost over 22 pounds in the previous 6 weeks. As I stood there staring at myself in the mirror, my eyes began to fill with tears. I tried to hold back the emotion but it was useless, I began to weep. Then I began sobbing, I sat on the floor with my head in my hands, tears rolling down my cheeks as weeks, months, and years of pain, despair, empathy and anger came tumbling out from deep inside me. 

At that moment, as I sat there looking at my tears dropping onto the tile floor, I realized they were bright red. My tears were mixing with India’s blood that was smeared all over my face.

I will use the words utter despair and absolute horror to try and describe that moment. But in all reality, I can’t accurately convey the emotions I was experiencing and I don’t believe I ever will be able to.  For me, just writing this story has been exhausting and taken me over 2 years to complete.

Saturday, September 3, 2011

Holding Out Hope

My daughter has beaten all the odds throughout her 13 years on this planet.  She's a true champ, one of my best friends and my hero.     

Up until late 2007, early 2008, she progressed so much that she could walk, dance, stand and jump with just a little assistance.  This was due to intense interventions and therapy all throughout the United States and Canada.  In 2008 though, everything went wrong.  

India spiraled downhill before my eyes and the worst of it wasn't witnessing India's bitter disappointment as she tried in vein to make her body work.  The worst of it was the pain that ravaged her.

As a father, this is horrific to witness and the helplessness can't be properly described. Sometimes late at night, the pain gets so bad that India asks me to hold her on my chest as we are lying down.  She curls up in the fetal position while I rub her back and legs to relax her little body and hope to alleviate the pain. 

We’ve gone through a series of doctors, all of whom have good intentions.  But despite the best of intentions, some of the doctors have been very wrong.  In fact, several of the suggestions from Physicians could have caused India a lifetime of intense chronic pain and infection. 

Fortunately, I’ve been at this for 13 years now and am wise enough to know to question everything.  We did some research and found a world-renowned doctor in Summit, New Jersey who specializes in working with children with disabilities.

We recently made the trip from our home in New Mexico to New Jersey.  Our visit with this doctor was beyond belief.  For the first time in a very long time, I felt overwhelming hope and happiness. 

This new doctor was the first to not want to do intensely invasive surgery.  He explained in detail what the bleak outcomes would be if we allowed India to go under the knife and saw of the surgeons.  Keep in mind, the previous surgeons wanted to saw off the top of my daughter’s femurs and pack the leftover void with some sort of substance in the hope to keep the remaining femur from pushing its way through the muscle and skin; leaving bone exposed.  This new doctor talked about the infections and pain that would be caused from the plethora of screws and hardware that would have to be attached to India's bones. 

So he we sit, excitedly preparing and patiently waiting for September 27th, the day of the new doctors outpatient procedures.  My little girl will have what’s called an Alcohol/Ethanol Chemoneurolysis to take away her chronic pain in her hips. This is procedure where the nerves that are causing my daughters pain will be treated with a solution that deadens them.  She will then have a Soft Tissue Lengthening to loosen up her hips/legs.  And finally, my baby-girl will receive a Transtympanic Neurectomy and Chorda Tympanotomy.  This procedure eliminates her excessive drooling.  India is absolutely beautiful and currently has 2 boyfriends.  I can clearly see her embarrassment when she drools in public so this procedure should really help her self esteem.

I’m feeling like I can see the light at the end of the tunnel right now.  I’ll let everybody know how it goes at the end of this month.

On a side note, I have to admit that we are incredibly fortunate to have good insurance.  Just the doctors fee for the Transtymapanic Neurectomy is $9,000.00, not including hospital fee's.  The entire bill will exceed $40,000.00.  I feel so sorry for those parents who don't have insurance.

The following are 3 of the 4 stories of what happened to my daughter that left her with Cerebral Palsy:

India Walking On The Beach 2007

India Standing 2008

India Skiing 2009

Monday, August 22, 2011

"2nd Opinion"

By 2011, India had been spiraling downhill at a very rapid pace. My little girl went from standing and walking assisted, dancing, sitting on her own and almost completely pain free to not being able to walk, stand, sit, dance and in constant pain to the point of not being able to attend school for a full day. Here is a video that shows India's gains and losses.

This has been a terrible experience for all of us, the helpless feeling as my daughter cries in pain is chilling.  Either Vikki or I were up in the middle of the night, every night trying to comfort India.

Until 2011, we had been putting our faith in a pediatric orthopedist from our home state.  This physician's bedside manner was rough but I believed this doctor was focusing on India’s needs, the "whole picture"; not just slice and dice.  This doctor said our only real option to reduce India’s hip pain was a very intense surgery called the McHale procedure.  To describe this procedure in the simplest way, they cut off the top of the femurs, leaving a void in the upper thigh that they fill with fat from other areas of the body.  This didn’t set well with us, something was very wrong.  In addition, this doctor put my little girl on a monthly Pamidronate infusion.  This wasn’t a pleasant experience and India was clearly not happy about it. The infusions made her sick and we saw no positive results. We were confused and scared.

As luck would have it, my wife came across a world renowned physician in New Jersey while reading published material related to cerebral palsy.  This doctors writings were absolutely amazing. I felt a new sense of hope with each word I read.  We immediately made the decision to book a flight to New Jersey and meet this man.

Our meeting was fantastic and to say I'm elated would be an understatement.  This doctor, Dr. Roy M. Nuzzo, was hands down the most knowledgeable, no bullshit physician I've ever met.  He took his time, hyper focused on us and was very concerned about the "overall picture" of India's life; she wasn't just another patient.

Dr. Nuzzo told us that the procedure that our doctor wanted us to do, McHale procedure, was not only inappropriate, but it would cause my daughter a lifetime of pain and infections. When I asked about other "replacement" surgeries, he didn't pause for one second with his response; NO.  Unlike other doctors who were willing to put my daughter through a year of traction/recovery, certain pain and no guaranteed outcome, he went the opposite direction. Dr. Nuzzo gave us an outpatient option that would take away India’s pain and allow her to get on with life and being a kid.

The first procedure he recommended was called an "Alcohol Block".  This is where the nerves causing the pain are treated with an alcohol solution that deadens them.  This lasts anywhere from 1 to 10 years or more.  Then he recommended a series of "Soft Tissue Lengthening" (My daughter had this once before).  I asked if India could do the things she loves after the surgery like standing and dancing.  Dr. Nuzzo told me that his instructions post surgery will be "let India get on with her life". Those were the sweetest words I'd heard in a long time.

Dr. Nuzzo also spent a long time explaining to me why the infusions my daughter was getting are not only useless but harmful.  He said that India’s previous physician should never have started these treatments, there was no reason and some of the outcomes that were promised were 100% false. There I sat feeling

I booked my child’s surgery on the spot.

I was incredibly thankful that we came across Dr. Nuzzo and especially after all we’d been through with India, I was once again reminded that doctors are "educated guessers" and I should never hesitate to do my research and get a 2nd opinion.

Dr. Nuzzo can be found via his website: