Life through the windshield....

Someone once told me to always look at life through the windshield, not the rear view mirror. The past month, our family has done both, looking forward to Trouper's daily progression and milestones but also looking behind us, remembering where we were before and after February 16th and how difficult the past nine months have been for us.

It's hard not to reflect on the past year, but it's exciting to see the accomplishments that not only Trouper's made, but that our family as a whole have made. We are also looking forward to Trouper's eventual transplant, and if the past few months have shown me anything, it's that my husband is a real trooper and has the perfect name! He's braver and stronger than anyone I know and when the time comes, he will smile, make a joke about his new heart and his new career as a male dancer with a nice chest scar, and be the new poster boy for heart transplants.

I wouldn't be looking through the windshield if it weren't for the love and support I've gotten from our family, friends, doctors, nurses and even strangers. When I didn't know if I could endure another minute at the hospital, I heard yes you can, just take a breath and go back. When I complained about the way people were treating me, I heard does it matter in the end if they like you. When I didn't know where I would find the money to pay the car payment, I heard no worries, I've got this. Words of encouragement, words of wisdom and words of healing. Prayers and love for us from all over the world, a constant reminder that we aren't alone, and that our family is loved beyond words. I know I've said thank you, but I hope each of you know how deeply I mean that, and how much I appreciate your love, and sometimes gentle nudges, that keep me looking through the windshield. I promise to live life fully everyday, looking ahead to tomorrow!

Live
It
Fully
Everyday

Unanswered Prayers

I am stubborn and like to call all the shots, including all medical decisions regarding my family. Okay, I will pause while you gasp; in disbelief that timid, little 'ole Dara is stubborn. Laughs aside, it's been extremely difficult for me to relinquish control to those that should have it, but on Wednesday, August 28th we gave full control to Dr. Dean and his staff, finally realizing Trouper wasn't getting any better and after seven weeks in the hospital, a heart wasn't going to find him soon enough. His health was failing at an alarming rate, he looked and felt awful and his quality of life was nothing short of sad. The LVAD will allow him to build his strength, become active and best, allow him to come home, where he belongs. Our home is simply not a home when he isn't there. It's a sad place, even the dogs mope around, depressed that their beloved Trouper isn't around to sneak them treats or let them lay on my pillow and hog the blankets in bed. At 8 am, Trouper had LVAD surgery, thus making him inactive on the transplant list for six to eight months while he heals from surgery. Our family and friends gathered, prayed and waited six long hours for word that the surgery was a success. Dr. Dean met with us, and told us Trouper had done wonderful, and was well on his way to a speedy recovery. Today, two weeks and one day after surgery, Trouper is heading home. I can't find the words to describe how exciting this is, or how grateful I am, that Dr. Dean took control and told us, not asked us, that Trouper was getting an LVAD. An unanswered prayer. We had prayed relentlessly for a heart, but Trouper's perfect heart isn't ready yet. The Lord knows that home is where he needs to be, and that our family was incomplete without him. He knows that Trouper's body isn't healthy enough for the new heart and that he needs strength to be able to fight off infections. I read somewhere that the Lord may delay his promises, but will never deny them so I'm holding firm this is only a delay, and the Lord is just making sure Trouper's new heart arrives when his body is able to receive it.

When Trouper gets home today, he will officially be 40 years old....what an awesome birthday gift! He will be able to sleep in his own bed (dogs and all), have a homemade meal (he's requested turkey meatloaf) and his favorite birthday cake (yellow cake with chocolate icing). He's been blessed with another trip around the sun, another chance to hug the kids, kiss me, go fishing with friends, make everyone around him laugh and be the Super Trouper that everyone loves. So, on Trouper's fabulous 40, my wish for him is enough. May he always have enough happiness to keep him sweet, enough trials to keep him strong, enough success to keep him eager, enough faith to keep him encouraged and enough determination to make each day a great day! Trouper, if someone asked me what a beautiful life means to me, I would lay my head on your shoulder, hold your hand and answer with a smile; this.

Gratitude

"As we express gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them" John F. Kennedy

I recently read an article that stated seven out of every ten patients that have either received an organ transplant, or are waiting for one, are on public assistance. This includes medicaid, food stamps and section 8 housing. I truly understand the plight of these individuals, and I am beyond grateful that my family and I haven't become one of those seven and our friends, families and even strangers have given generously towards Trouper's medical expenses and our families immediate financial needs.

Early in our journey, an old high school friend wrote me a check, no questions asked, making it possible for me to stay at the hospital with Trouper (my vacation time ran out very quickly). We've had friends who have sent us gift cards for groceries and medicine, friends who started and donated to an online fundraising site and friends who sent food over to the house or came over and sat with Trouper so I could go to work or to run errands. Because of our loved ones, we have been able to keep a roof over our heads, a car to drive to and from work and doctors and groceries in our cabinet. We have been able to afford limited home health and pay for medicine and doctor co-pays. We even splurged and bought Trouper some new shorts because he has lost almost 100 pounds and his old clothes fell off of him. That doesn't mean we haven't made sacrifices and gone without. My own health has suffered and affording the doctor and medicine for me is often difficult, our son had to put off school to help us, Emily had to quit her afternoon part time job to stay home with Trouper so we didn't have to pay for full time home health care and yes, we've done without on birthdays and holidays since our journey began. Emotionally I think we are all drained but we know that God has a plan for us, so we will live by the word thanks and continue fighting with our Super Trouper.

The best is yet to come

August 14th. For so many years, I've dreaded this day because it just means another candle in the cake, more jokes from the kids about me skipping a birthday or how we need a fire extinguisher to put out the above mentioned candles. This August 14th, I am grateful for the 41 candles in my cake (or cupcakes as I suspect I will be receiving later today) and reminded that the more you praise and celebrate your life, the more life there is to celebrate. I remember special birthdays; my 18th spent with Jennifer Price watching Ghost and crying our eyes out. My 20th, the first one with my beautiful baby Ryan and knowing that Trouper was going to ask me to marry him any day, my 23rd, when I was exhausted from having a hyper 3-year old and a happy, smiling newborn baby girl or my 38th, the last time I heard my precious brother offer birthday blessings to me. All special and unique, and worth celebrating, not dreading. This August 14th is special because the Lord blessed and allowed me to spend another trip around the sun with my precious Trouper. In six months, he's fought for his life, I've fought for our family and we've survived what most couldn't. I've been praying, and hoping that my birthday wish for a new heart would come true today, and, as someone pointed out, it's only half over, we could get that call any minute. So, as I blow out 41 candles this year, hopefully without the need for a fire extinguisher, I am going to not only make a wish but also thank the Lord for the blessings I've received, and the ones that are right around the corner!

Time Rolls On

As February faded into March, Trouper continued to make progress and was released to go home, with home health care, on March 12th. He was back in the hospital for an overnight stay in March but stayed the same through the month.

In April, he was given the green light to go to the beach, our annual spring break trip we had planned and paid for many months before for Emily and her friends. It was their senior trip, and wild horses (or doctors) weren't going to keep him away. We arranged home health care in Florida, and Troup's brother and his girlfriend flew in from Texas to help us with the eight (yes we are brave) teenagers and visit with us. We had a wonderful time and the time away did everyone some good! His health stayed the same during April and his daily routine included thirteen medications, visits from the nurse, line flushing, weighing, fluid counting, and the list goes on and one. He didn't have any energy, and just getting out of bed each day was a huge task. Weekly trips to the hospital to visit the doctor zapped him for days and we both realized, although we kept praying, that things weren't improving.

May was a roller coaster month, we had to take the highs with the lows. It brought sad, although expected, news; Trouper's heart wasn't recovering, and we would need to start exploring some options. His pump medicine, that he was receiving 24/7 via a pic line, was only a temporary fix and would eventually start causing issues with his other organs. His ejection rate was only 12% for the left ventricular and 20% for the right. The doctor mentioned transplant for the first time and we (okay me) immersed myself into researching his options. LVAD, which is called the "bridge to transplant" was basically a temporary pump that would bypass his heart, pump and would circulate the blood through a backpack type machine. Transplant was another option, and seemed the best one, for his age and condition. He would need to get rid of his life vest, the vest he had to wear 24/7 that would shock him should his heart stop and get an internal defibrillator implanted. There would be massive amounts of tests, and we decided we would pursue, and push, the transplant option. During May, he had a constant cough and one morning, passed out from coughing. He was admitted to the hospital two days before Emily's graduation and from the moment he was admitted, told the staff he was leaving by Wednesday because he would be there when his baby girl walked across the stage. His wonderfully kind, smart and dedicated nurses and doctors agreed, and worked really hard to get him home and he was in the audience when Emily Jene' Gamble became a 2013 Graduate of Parkview High School. A child graduating is always special but Emily's walk across the stage was a walk for our entire family. We had come through the worst four months of our lives, and we had done it together. We had made a decision to wait and tell Emily about Trouper's health status until after she was done with the school year. We wanted her to celebrate the end of school as carefree as possible, but I think deep down she knew something wasn't right. But she's a little Trouper and put on a brave face and made it through and made us all so very proud. Ryan said it was hard to imagine his sister was graduating, seemed like yesterday it was him. Then he said something about it being the last time we would ever be at Parkview as parents. Such a wonderfully sad moment, if that makes sense. I was flooded by memories of their activities, remembering being exhausted and wondering when it would end. Then, all of a sudden, it did.

Ryan & Emily: No one will ever understand the strength of my love for you. After all, you're the only ones that know what my heart sounds like from the inside.

I know you like to sleep BUT.....

On Thursday, February 21st, six days into our new journey, the doctor told us they had the pneumonia, Troup's blood sugar, his blood pressure and a host of other issues under control enough that they were confident in bringing him out of his "sleep". At 4 am on Friday morning, they would start weening him off his sedation medicine. I was already emotionally drained from telling my sister and Mom goodbye but I knew that I had to be there, and be with him when he woke up. He would be scared, disoriented and confused, and I wanted the first words he heard to be from me, telling him I loved him so I ran home, took a quick shower and met his Mom and Aunt at the hospital for our overnight stay. His night nurse, whose name I can't recall, wasn't the friendliest and was a little irritated he had to give Trouper a bath. Of course I offered to help but he told me I had to leave the room and he would call me when he stopped the medication. I didn't hear from him for an hour, so I ventured back into his room and he had already started the withdrawal. I wasn't going to let one not so nice nurse rain on my parade so I gathered a pillow and blanket, made a makeshift bed in the window sill and hunkered down. An hour passed and nothing. Two hours passed and nothing. The third hour passed and I went out to stretch my legs and talk to Teresa and let her know nothing was happening. I could bore you with hour by hour details but just to summarize, this went on for four days. Those that know him know of his love of sleep. He covets his sleep, can sleep anywhere under any circumstances and never misses an opportunity for some shut eye but this was ridiculous! His parents left Sunday and were so sad that he didn't wake up before they had to leave but everyone continued taking turns staying there with him, hoping he would wake up and flash his brilliant smile, laugh his heartwarming laugh. Sunday night, DJ and Katee offered to stay the night, along with Ryan so I headed home for a few hours of sleep. Since sleep wasn't playing nicely, I headed back about 5 am and DJ said that Troup had moaned a little and was becoming a little restless so I hurried back. The nurse told me to talk to him, instruct him to wake up and try and get him to open his eyes and look at me. When I said his name he turned his head toward me and the waterworks started. Through the tears, I told him I loved him and begged him to squeeze my hand and guess what, he squeezed my hand. Slowly, he opened his eyes, and I called for the nurse. It only got better from that point, he still couldn't speak because of the ventilator but he was able to give DJ a "hook 'em" when he came to say goodbye. The kids headed up and within a few hours, they took disconnected and removed the vent and I heard the sweetest, most miraculous words, said in a slight, raspy whisper "have I told you lately that I love you?" Never would I take that voice for granted again. Never would I take a phone call or a visit for granted and I would cherish every second of conversation with the love of my life. I gave the kids some time alone, while I let all the family know he was awake and all the wonderful progress he made. We continue to be blessed, and just added another miracle to the "while you were sleeping" book. 

Music, Music, Music

I can't put into words my families love (really obsession) with music. My earliest memories are of my Dad and his HUGE vinyl collection, playing albums ranging from the Beatles, Boz Skaggs, Creedence Clearwater Revival and Neil Young, to name a few. Trouper feels just the same and our relationship has been centered around our mutual love for music. In high school, Trouper and his family moved away from West Texas to Atlanta. During the year he was gone (he came back to Texas as soon as he turned 18) we wrote one another long, heartfelt letters and he always included a mixed tape. Yes, a cassette tape and on those cassette tapes he introduced this country girl to bands like the The Cure, REM and even The Moody Blues. Over the years, we have had a couple of songs we called "our song"; Eric Clapton's "Wonderful Tonight" and Dave Matthews Band "You and Me". Each one holds a special place in our hearts and will always bring a tear to my eye as I remember a special time in our life together.

Over the course of Trouper's "sleeping", one of the night nurses said that the hospital had music channels over the television system and gave the okay for us to turn it on for him. I was certain Trouper would appreciate this much more than us singing to him, I know he was probably itching to wake up and tell us to shut it up, we were killing his ears! So on Wednesday night, we turned the television on to the classic station, and within a few minutes, his stats went haywire and he became agitated. The nurse let it go on for a few hours but ultimately decided the stimulation was too much for him and turned off the music. I knew he wasn't truly agitated and was probably just wanting to wake up and ask us to either a)turn it up or b)turn the station because he didn't like the current song. Whichever of the two, it didn't matter, it let me know that he was still there, wanting to wake up and talk about music. And, just like Dave Matthews says, together, we can do anything and we would, as long as we have each other!

                                                         "You And Me"

Wanna pack your bags, Something small
Take what you need and we disappear
Without a trace we'll be gone, gone
The moon and the stars can follow the car
and then when we get to the ocean
We gonna take a boat to the end of the world
All the way to the end of the world

Oh, and when the kids are old enough
We're gonna teach them to fly

You and me together, we could do anything, Baby
You and me together yes, yes [x2]

You and I, we're not tied to the ground
Not falling but rising like rolling around
Eyes closed above the rooftops
Eyes closed, we're gonna spin through the stars
Our arms wide as the sky
We gonna ride the blue all the way to the end of the world
To the end of the world

Oh, and when the kids are old enough
We're gonna teach them to fly

You and me together, we could do anything, Baby
You and me together yes, yes

We can always look back at what we did
All these memories of you and me baby
But right now it's you and me forever girl
And you know we could do better than anything that we did
You know that you and me, we could do anything

You and me together, we could do anything, Baby
You and me together yeah, yeah
Two of us together, we could do anything, baby
You and me together yeah, yeah
Two of us together yeah, yeah
Two of us together, we could do anything, baby