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Root of the Problem

Hello blogging world, Anthony Macchio-Young here. I am going to be responsible for updating my blog from this post on, give my Pops a break. Figured I’d start with the root of the story with the bicycle accident and how I got my TBI (Traumatic Brain Injury).

It all started 6 days after moving to San Mateo to find a Graphic Design job. One of my professors, Jensen Hendriks, had put me in contact with a friend of his who builds apps for iPhones and just moved to San Francisco himself. On the sixth day my bicycle, that I shipped from Florida, had come in the mail the morning of February 1st, 2013, so I thought I’d take the CalTrain up to San Francisco and pedal to the networking party my new connection was having.

Tag  they required I used for my bike on the CalTrain.

Tag they required I used for my bike on the CalTrain.

I left with my bike on the CalTrain in San Mateo at around 6pm. Arrived in San Francisco around 6:45pm and then pedaled myself to one of my true passions in life…craft beer, 21st Amendment brewery and then went to City Beer Store for another craft beer. I pedaled away and realized I was headed in the wrong direction, stopped and asked a couple the way to Russian Hill, they told me and I started pedaling in the right direction. I then turned onto a main road and started going downhill. As I traveled downhill I didn’t notice the trolly track because they were foreign to me. My front bicycle tire then gets caught in the track and I flip over head first (had my helmet on thankfully). I stood up immediately and three bicyclist on the sidewalk saw it all go down and said I needed to go to the emergency room and then stopped a taxi van for me. He put my bike in the back, then asked me where I wanted to go, and I said CalTrain. I waited for around 15 minutes for the CalTrain, got me and my bike on, took a few pictures of my head because I knew something was wrong, but TBIs were so foreign to me I thought it was just a concussion, so I thought staying up throughout the night would do well enough.

Picture taken on the CalTrain to check for any visible wounds.

Picture taken on the CalTrain to check for any visible wounds.

We arrived in San Mateo and I got out, walked my dilapidated bike back to my apartment, then realized I had lost my keys somewhere along the way (thankfully), called a few locksmiths with no luck at 11pm on a Friday night, texted my then girlfriend, who was a flight attendant, that I’d need her to stay up with me that night, then took my jacket off and bunched it up like a pillow, and passed out on the apartment’s community porch (last thing I personally remember). My neighbor, whom I never met, found me and dialed 911. The cops came and thought I was beyond drunk because a bottle of beer that I bought at City Beer Store, 3 Fonteinen Oude Geuze, had broken in my book bag. My neighbor then saw me having seizures because she was very familiar with seeing that with her epileptic brother and recommended that they call an ambulance. The medics were then smart enough to take me to Stanford Hospital rather than San Francisco General. Dr. Odette Harris, Stanford’s managing TBI neurosurgeon, performed surgery on my Subdural Hematoma on the left side of my brain and I was in ICU for two weeks and one day and then transferred to Kentfield Acute Rehab in Marin County.

Next post will cover my story with recovery in therapy thus far!

Home Again Home Again

One of the first things we did when we returned home to Mt. Pleasant, SC was to interview at-home caregiver businesses to take me to therapy whenever I would have it and provide in-home care. We were not having much success in finding the ideal situation, but, then my buddy Michael Onorato stepped up to the plate. Michael agreed he would take me to therapy everyday and hang out with me in my off time. I was, and still am, very appreciative that my elementary school buddy would do such an awesome thing for me! My parents and I initially went to East Cooper Hospital on September 11, 2014 for a PT, OT and Speech Therapy eval, as recommended by Shepherd Center’s outpatient facility. After my PT and OT appointments we heard the unfortunate news that insurance was no longer going to cover Speech Therapy. After hearing that my heart dropped, but the East Cooper Speech Pathologist, Katie Edwards, was nice enough to give me a free eval while my dad contacted both our insurance case manager at the time and Shepherd’s Pathways. East Cooper’s PT therapist, Suzanne Rodgers, was also nice and told us that she didn’t think that East Cooper rehab would be the best therapy source for my TBI related injuries and specific therapy needs, so she referred us to MUSC and provided us with MUSC’s outpatient therapy’s number.

Walking on the elbow platform walker at MUSC.

Walking on the elbow platform walker at MUSC.

Once we got into therapy at MUSC I was registered with all three disciplines, which were once again covered by insurance, even Speech (thankfully). I started in PT learning how to scoot down a mat, which doubled as my bed, while sitting on the edge and walking on an elbow platform walker, focusing on lifting my left leg fully. In OT I would put a heated pad on my left shoulder’s pectoral muscle to help loosen it up before stretching it and trying to open sealed containers myself. For Speech Therapy I was mostly focusing on the letters my tongue was having troubles producing like ‘K’, ‘G’ and ‘CH’. Unfortunately, MUSC was unable to schedule therapies more than one or two times a week. With my injuries I needed to work as hard and often as I could to achieve the best outcome for my recovery. So one day while I was at MUSC my dad did some investigating and found Roper St. Francis Rehabilitation Hospital who said they could give me all three disciplines three days a week.

Katherine, Michael and me during a PT session

Katherine, Michael and me during a PT session.

I am now attending Roper St. Francis and have been since December 9, 2014 (almost a YEAR!!). My PT is a recent graduate from MUSC, Katherine Bennett, who is all about nuero-cases and has recently gotten her nuero-IFRAH certification. We have been working on everything from isolated muscle strengthening to walking with no support or assistance. I initially started PT for 1 hour 3 days a week, but am now doing 2 hours 4 days a week because Katherine saw my potential and enjoys working with me! My OTs, Tara Murphy and Lindsay Deane, are awesome as well. We are currently focusing on getting more range of motion out of my left arm and I’ve already learned how to put on all of my clothes myself. One of my OTs recommended I should get tendon release surgery on my left finger joints because they want to fist-up and we’ve already tried everything we can do to get them to relax, so I am having surgery to relax my fingers in a few weeks, December 3, 2014 (right fingers crossed). I was released from Speech Therapy at Roper around May 2014 because the therapist ran out of ideas to help me gain anymore speech intelligibility or to help my dysarthria. Since May I started with a few new Speech Pathologists at East Cooper Hospital: JoAnn Fischer, who previously worked with TBI cases in Baltimore, at the Kennedy Krieger Institute; Katie Edwards, the one who had been nice enough upon my return home to give me my initial speech eval; and Kaylen Alford, a recent graduate from App State with her degree in Speech Therapy. I just finished 6 weeks of LSVT (Lee Silverman Voice Therapy) to help get the volume of my voice up to a higher decibel in everyday conversation. And while doing my ‘ahh’s I got them up from 3 seconds while at Shepherd Center all the way up to 19.5 seconds with the help of East Cooper! So that’s my story so far. I will make sure to keep you all posted on big obstacles that I overcome and how my surgery goes on December 3rd!

Stage 2: Inpatient Rehab

First Step

My trunk failing to support me on my attempt to take my first step.

I started remembering what was happening and going on around me 2 weeks after ICU. While at Kentfield Rehab, in Marin County, California, the Speech Pathologist was working very hard on getting me to move my tongue and get some kind of sound out of me, but had no luck. In Physical Therapy I would mostly stand up in the standing frame and 23 minutes was my record while there. I also tried to take a single step but failed miserably, with my trunk collapsing. For Occupational Therapy I would do a board with different sizes and shaped pegs with my right hand because the left side of my body was completely immobile and still does suffer muscle tone. Meanwhile friends and family ran a fund raising party for me back home, Mt. Pleasant, SC, while my mom was staying in California with me and until I got home. After the fund raiser my dad had accumulated $15,000 (Thank you everyone!) and the first thing he did was buy my mom, a traveling nurse, and me first class Delta tickets to Atlanta because they would be bigger seats than coach and way cheaper than renting a private jet. So they took my trache (surgical opening to restore normal breathing) out on April 19, 2013.  Then on April 21, 2013 we then caught a 5am flight to Atlanta to continue inpatient rehab at Shepherd Center.

 

My first full day of therapy at Shepherd Center I said my first word ’hi’. I then worked on my memory, both long term and short term. Within the first week I was there I did a swallow study to determine how well I was swallowing. I passed my swallow test the first week I was there and was put on a level 1 diet (pureed food) and eventually level 2 (honey thickened liquids and fine foods). Another thing I did in Speech Therapy was practice yelling out ‘ahh’. The typical, healthy, person can yell out ‘ahh’ for 20-25 seconds, but while at Shepherd I could only get mine up to 3.5 seconds tops. In Physical Therapy I was first started on serial casting to get rid of my ballerina feet, then moved on to mat exercises, walking in a platform walker with Bioness (remote estem device), graduated from the hoyer to heavily assisted transfers, and practiced getting into a vehicle for my parents’ sake. Occupational Therapy consisted of arm stretching, getting the first movement out of my left arm, and the FES bike (pedaler for OT and PT that consist of estem).

'Pedaling' my way to the city on the FES arm bike.

‘Pedaling’ my way to the city on the FES arm bike.

While there I got a Baclofen Pump to help reduce tone in my left leg and had surgery in my left ankle/achilles tendon to correct the ballerina feet because the serial casting didn’t help as much as everyone hoped. Graduated 4 months after being at Shepherd and I was then invited to their outpatient facility, Pathways.

Next entry will be about outpatient therapy.

Summer of 2014 is the Summer of Fun, Laughter and Recovery

Stickers, flags and Tattoo's. Everyone loves Anthony's logo

Stickers, flags and Tattoo’s. Everyone loves Anthony’s logo

During the summer of 2013, we were still fighting fevers, spells of vomiting and casts on one arm and one leg. There was an operation to implant a Baclofen pump just outside Anthony’s stomach, and another operation on the tendon in his foot. There was a constant flow of doctors, nurses and physical therapists. We were doing everything we could to travel down the road to recovery, but it seemed like there were roadblocks everywhere we turned. Anthony stayed strong and stayed the course. His strength and positive attitude then and now has helped make the summer of 2014 the summer of recovery.

As the summer of 2014 was approaching, Kim and I could see Anthony had become stronger and more confident. His attitude was good. We knew we were finally on the road to recovery and were ready to travel down that road as far as it would take us. We also knew our journey would be steady – but not fast. As it turned out, this summer has been a great one for Anthony.

AnthonyCloseUpScubaSmall

The summer started with the Jackson Gap, Alabama camp in May, put on by The Shepherd Center in Atlanta. It was three days of campfires, cabins in the woods, bunk beds, fresh air and lakeside breezes. It filled our hearts with joy as Kim and I watched Anthony continue his recovery, smiling and gaining confidence by participating in the many camp activities. Anthony went scuba diving twice, went fishing, shot a gun and did some tubing. We tie-dyed some shirts together – that was kind of fun – and went on a pontoon boat. We found that camp was good for our souls and a wonderful opportunity for Anthony to realize that his limitations are not what he thought they would be.        anthonyWithFishSmaller

Friends, Family and Charleston’s Medical Community

Anthony knows his attitude and the way he approaches his recovery is the most important part of this process. But the various blessings surrounding his recovery are beyond this world. The road we’re on is full of caring, heartfelt people. Everyone is doing their part to help guide the recovery process.

Michael with Anthony and Kat on a trip to Florida summer 2014

Michael with Anthony and Kat on a trip to Florida summer 2014

Anthony’s friend since the third grade, Michael Onorato, is there every day. Kim and I know that Michael has an awesome heart and a caring personality. Even before Anthony was strong enough to come home, we knew we wanted to talk to Michael about being part of his recovery team. Each day, Michael and I discuss the schedule, making sure Anthony gets to Roper Rehabilitation for his physical and occupational therapy. Three days a week, Anthony and Michael go to East Cooper Rehabilitation for speech therapy.
Michael and Anthony are together nearly as much, if not more, then Kim and I are. Without Michael and their friendship, the road to recovery would a little bit harder.

Roper’s Outpatient Rehabilitation Services is Anthony’s home away from home. Enough good things could not be said about the staff and leadership there. The halls are full of hope and kindness, which has contributed to and continues to push Anthony down the road to recovery. Emma Chambers is part of the leadership team at Roper, and her warmth and kindness toward Anthony is so heartwarming. After talking with Cathy Therrell, who is the director of rehabilitation, and its obvious that caring and warm hearts flow down from the top. Tara Murphy, Anthony’s occupational therapist, works with him on the day-to-day activities – dressing, brushing his teeth and various other daily activities that most of us take for granted. Tara always displays the caring concern we’ve come to know and respect as Roper’s core approach to caring for their rehabilitation patients.

Anthony’s physical therapist is front-and-center in the recovery process. Katherine Bennett’s energy

Kahterine from Roper and Meg from The Sheperd Center spends time with Anthony in Charleston.

Kahterine from Roper and Meg from The Sheperd Center spends time with Anthony in Charleston.

andpassion for her patients is just what Anthony needed. Her desire to push and teach him what he needs to know is endless. When Anthony accomplishes specific levels or tasks in the recovery process, Katherine’s enthusiasm for his accomplishments are obvious. When Anthony was in Stanfords Hospital’s ICU and the doctors would make their rounds with the residents, I knew Anthony was giving something back to the medical professionals who were helping him fight for his life.  As they talked among themselves, learning about what to do in real life situations, I felt Anthony was giving back to them. When the residents become doctors, they will remember some of the things they discussed as they surrounded Anthony’s bed. I hope some of the things they learned while helping Anthony will help other patients. The same goes for Katherine. I know Anthony will be helping other patients who come into Katherine’s life. The impact Katherine and the rest of the team at Roper’s Outpatient Rehabilitation has been profound. Our family is so happy they are part of Anthony’s recovery team.

Although Anthony’s recovery starts with his attitude, Kim and I have learned we have to back him up by asking the right questions when we’re talking to the medical professionals involved with his care. The answers to these questions will help guide us as we travel down the winding road of recovery.

Speech is an important aspect of Anthony’s recovery. By asking a lot of questions and staying the steady course, we found a super speech team at East Cooper Medical Centers Out Patient Rehabilitation. They just moved into their new facility next to the East Cooper Medical Center, so everybody there is even more excited than usual. After several visits and telephone conversations, we were able to put together a top-notch speech team. We feel blessed to have Jo Ann Fisher head up Anthony’s speech recovery. When I found out Jo Ann
has had extensive experience with traumatic brain injury patients, I was excited to have her on Anthony’s recovery team. Our experience has been that most Charleston speech therapists do not have a lot of experience with traumatic brain injuries. When Anthony and I got a chance to meet her for the first time, we liked her and we realized that she had the expertise to take Anthony down the road to speech recovery. Kaylen Alford, who is Anthony’s age, also has joined Anthony’s speech recovery team. She’s enthusiastic and has the right mix of passion, knowledge and desire.

Mom and Anthony enjoying a moment

Mom and Anthony enjoying a moment

The summer of 2014 has taken us down the right road in Anthony’s recovery process. Like any well-built road, the builders constructing the road are essential to a solid foundation. Our family feels that Anthony’s outlook is solid thanks to the medical professionals who are contributing to his recovery.

Summertime is camp time…

The Shepard Center offers their patients, family and friends the opportunity to enjoy the great out doors each year www.campascca.org .  Anthony had a full weekend with fishing, scuba diving, kayaking and tubing.  A great time was had by all.
AnthonyAndHisPoolPosseyAnthonyGoodPhotoInWaterSmalleranthonyWithFishSmaller

Home Based Recovery

It’s been a long time since we visited. There’s been a lot going on in our lives, and I wanted to let you know what Anthony has been up to.

Stickers, flags and Tattoo's. Everyone loves Anthony's logo

Stickers, flags and Tattoo’s. Everyone loves Anthony’s logo


As some of you might already know, we’ve been home since Sept. 7. Although we’re home, Anthony’s journey to recovery continues. I have to say our lives are rich with hope, prayer, family, friends and daily activities that strengthen our family and our view of life.

I don’t want to get ahead of myself. I’d like to give you a glimpse of want our day looks like, how hard Anthony is working and the loving and caring people who have surrounded Anthony. Together they are leading Anthony down his road of recovery.
Of course, getting back to Charleston and settling in is important. Thanks to Carolina Services Inc. and Ed Tarr, our house is very wheelchair friendly and comfortable. At first, being back home made us comfortable. However, I quickly began to realize the comfort Anthony, Kim and I felt was not going to be an asset to Anthony’s recovery. It was good to feel a certain amount of tranquility, which was not something any of us had felt in a very long time. This sense of tranquility brought on a sense of peace. But peace is not going to push us down the road of recovery. I thought we needed to feel like we were sitting on the edge of our seat. We needed to be a little anxious, mixed with a desire and drive. After being home for a few weeks, I realized why the Shepherd Center, weeks before Anthony left, talked about returning, about other patients who had left and come back after a few months at home. I believe when you leave the environment of a rehabilitation hospital, it’s easy to feel comfortable – too comfortable. The drive and anxiousness to get better and participate in rehabilitation must be carried home.

After being home for a short time, Kim and I began to focus on being more aggressive and assemble a rehabilitation team.

Next – GETTING BETTER FROM HOME BASE
Anthony’s new home-based team.

Starting A New Chapter in Mount Pleasant with Anthony Coming Hom

It was Saturday, Feb. 2, when Kim and I arrived at Stanford Hospital, where Anthony was in the intensive care unit. He had gotten his bicycle tire caught in a San Francisco trolley track and taken a terrible fall. Although he had his helmet on when he fell, he was now fighting for his life.

Within a few days, I got a call from Gayle. Our family had been turned upside down; I didn’t really know

Anthony's event April 13 was a blessed day. these are the angles who produced the show.

Anthony’s event April 13 was a blessed day. these are the angles who produced the show.

how much, but now I know that Gayle did. I couldn’t really understand what she was saying. I was thinking about doctors, nurses and what to do next. Gayle kept saying you’re going to need this and that. Anthony’s going to need care, we’re going to need a place to stay for a while and it’s going to cost money. I knew for sure that whatever she was saying, it came from the heart, but all I heard was blah, blah, Wells Fargo account, blah, blah, we need to raise money, blah,,blah,,blah.

Well, now it’s Friday, Sept. 6, and I couldn’t be happier that Gayle called me during those terrible times. Now I know more then ever why she called me. I know Gayle was called on so Anthony’s life, Kim’s life and my life would be a little and in some

The flooring throughout the home will allow Anthony easy access to his living space

The flooring throughout the home will allow Anthony easy access to his living space

cases a lot easier. Through Anthony’s fundraiser event, spearheaded by Gayle Price, the efforts of Jody Gouge, Carolina Services Inc., owned by Ed Tarr, and the overseeing of construction by David Wright, my family’s life is easier. God is good and, as far as I’m concerned, his work is seen through the efforts of the people I mentioned above and all the many, many other people who have “passed it forward” through their efforts to help Anthony.

Anthony, Kim and I leave Shepherd tomorrow – Saturday Sept. 7, when we get into a van from Mobility Supercenter that is equipped with an expensive Bruno set, which comes out of one of the side doors and lowers itself to the level of a wheelchair so that it’s easier to get Anthony into the van. Mobility Supercenter wanted exposure in Mount Pleasant Magazine, and I wanted the van for Anthony, so we were able to secure a van that will help carry Anthony around. To get the van, we needed additional money, which we received at Anthony’s fundraiser.

I’ve driven from Charleston to Atlanta and back so many times that I’m sure I could drive it in my sleep.HomeDecoratedLivingroom2 After driving 5.5 hours tomorrow, we will arrive to what I’ve been calling the “Mount Pleasants Pass It Forward Home.” Why? That’s the only way to describe the house Kim and I call home and where Anthony will continue his recovery. Over the past 30 days, under the guidance of Ed Tarr of Carolina Services Inc., headed by David Wright, and Jody Gouge have taken our humble abode and changed it into a show house showcase. And on top of that, its wheelchair friendly and the special bathroom Carolina Services built for Anthony will clearly make our family’s life easier.

 Saying goodbye: Getting ready to leave today was joyful, sad and inspiring all rolled up in one. We wanted to make sure to say goodbye to the health care professionals in Ward Two at the Shepherd Center. For the past two months, we’ve been at Pathway, and we haven’t seen any of Anthony’s friends – the nurses and rehabilitation staff. These were the first staff members who were there when Anthony and Kim arrived from California April 21. At first, they were preforming their jobs, taking care of Anthony and working on his speech, eating and physical therapy and checking his vitals. We all became fast friends. They are all great people, and we consider them our Shepherd Center friends. They truly care about our family, so much so that before we left them to go to Pathways, they threw a party, emphasizing Anthony’s progress (See their photo).

Anthony's Graduation from the Shepherd Center.The will always be in our heats

Anthony’s Graduation from the Shepherd Center.The will always be in our heats

They all got a kick out of the stickers used at Anthony’s fundraiser event and

Stickers, flags and Tattoo's. Everyone loves Anthony's logo

Stickers, flags and Tattoo’s. Everyone loves Anthony’s logo

the resulting tattoo I got to pay tribute to my youngest son. The day we left for Pathways, not only did the staff give Anthony a party to remember, but we purchased some modest gifts for the health care team who had inspired, cared for and nurtured Anthony further down the road to recovery. It gave us the opportunity to show Anthony’s family’s appreciation. We gave them plants. We told them as they watch their plants grow, Anthony is taking what he learned at StickerOnBridgeShepherd to continue to grow.

As I travel in our van on Interstate 20 to Columbia and Interstate 26 to Charleston, I know I will feel blessed because the fundraiser helped us get the van and the airline tickets to get Anthony and Kim to Atlanta and from California.  When Kim and I push Anthony’s wheelchair into our newly renovated home, we will feel blessed that Carolina Services, Inc., Ed Tarr, Jody Gouge and David Wright gave of their hearts and pocketbooks and decided to pass it forward through the floors, bathrooms and walls and through the Grace of God.

HomeDecoratedLivingRoomHomeDecorated

 

 

 

 

 

Thank you, Dear Father, for using your grace to make my family’s life a little easier.