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

Social Media and our "friend" Dr. Blincoe

As that first week went by we had visitors, phone calls, emails, texts and Facebook messages from all over the world. The kids and their friends tried to get the hastag #prayfortrouper trending on Twitter. Being sick in the 21st century is certainly different but a true and wonderful blessing. Everyone was asking for updates, I gave my phone to various people because it was too hard to keep up so someone suggested I start posting daily Trouper updates on Facebook. The outpouring of love and support was overwhelming. People who I didn't know, or hadn't heard from in twenty years, started contacting me via Facebook, checking in on our family, offering prayer and sharing memories of our Super Trouper. Reading the stories, catching up with old friends and talking to new ones kept us busy and provided us great moments of laughter. They reminded us that the world is so big yet so small and that our husband, son, father, brother and friend is loved. One story that still makes me laugh is the "Trouper and Neal went to the Guns N Roses concert" story. I have heard it thousands of times, and remember it vividly, but to hear someone besides Trouper retell it was priceless. I will always cherish the stories his Mom told about his undying love for me and how I was the only love he has ever known. Trouper can tell you the day he met me, what I was doing and the friends that were with me. It's different for me, I can't remember a time he wasn't in my life. First, as the crazy skateboarding kid at church, then as my dear friend and trusted confidant and finally, my true love. I will share one "secret", he says he loved me from the first moment he laid eyes on me, but years went by before we shared our first kiss and it was me who finally kissed him. Those moments and wonderful stories are what makes a life, and I'm so blessed to share them with Trouper.

Sometime around mid week I started towards CCU, and came upon Dr. Blincoe. I hadn't seen him in a few days and from the look on his face, the next words he spoke would probably be something along the lines of grim. I stopped, and said "are you coming for me" and he responded "no Mrs. Gamble, I am proud to say I am not coming to speak to you, your husband is slightly better today, the dialysis is working". I wanted to jump for joy and shout hallelujah! He didn't use the word grim and actually said something positive. And get this, he smiled. Yes, our friend, the grim Dr. Blincoe, smiled. Miracles never cease to amaze me! I had to run back and tell everyone the good news, and collectively we breathed a sigh of relief. Small victories, like Dr. Blincoe smiling and the word slightly, were huge to us and we were once again reminded that slow and steady wins the race. I had to go back and kiss my Super Trouper, once again reminded that it was me that kissed him first!

While You Were Sleeping

When Trouper was "sleeping" we started making a scrapbook titled "While You Were Sleeping". We listed visitors, listed snacks my sister ate (there wasn't a vending machine she didn't visit), listed doctors and nurses names, and had a page dedicated to Trouper's miracles. The one that makes me laugh is the "Dara was non-confrontational" miracle because if you know me, you understand how difficult that was for me! I am a Texan through and through and was born with a big Texan attitude. I don't take no for an answer and I certainly never give up, two things which are serving me well on our journey. The one that makes me thank God he was with us every minute was the "balloon removal" miracle. On the 19th, the doctor thought Trouper was well enough for balloon removal, meaning his heart would be pumping on it's own. He was still asleep, but they had downgraded a few machines and were confident he would withstand removal. Dr. Greg, one of his is extraordinary CCU doctors, prepped him for removal. An emergency within the CCU occurred and Dr. Greg was called out of the room. When he returned, Trouper's monitors were going haywire and his blood pressure was all over the place so he decided to hold off on removal. If he had started and that had happened, Trouper wouldn't have made it, they wouldn't have been able to stabilize him in the middle of the removal. Small blessings, like an emergency page, are why he is still here with us today.

Later that night, when I had some alone time with Trouper, I sat holding his hand, telling him the story of our first hospital visit when Ryan was born. I was so young when Ryan was born and had such huge decisions to make and uncertainty filled the air. Trouper never tried to persuade me and that night, after Ryan made his entrance, Trouper sat with me for hours, just holding my hand. Here we are, 21 years later, and we sit again, alone in a hospital, facing such uncertainty, but still holding hands. We have come such a long way from scared teenagers in West Texas but no matter where our lives have taken us, or what adventures we have been on, we always had one another and the spaces between our fingers still fit perfectly. He is my home, my  touchstone. When our babies were born, we held hands. When we loaded up two kids, a rabbit, a household of furniture and headed for the unknown in Georgia, we held hands. When his beloved Grandmother passed away, we held hands. When we drove to Texas to say goodbye to my sweet brother, we held hands. All the good moments, and the bad, we've made it by facing it together. So while you were sleeping, I would hold your hand and help you through....

Paging Dr. Supermodel

February 18th, or as I like to call it, meet Dr. Supermodel day. Yes, I'm aware this seems a little lighthearted but the somber and heavy mood surrounding us was beginning to suffocate and, just as Trouper would do, we looked for humor wherever we could find it. Enter Dr. Supermodel, or as the nurses in Piedmont CCU like to call him, Dr. Tight Pants. Dr. Supermodel is a Nephrotologist, or in layman's terms, a kidney doctor. They usherd us out of the room so he could evaluate Trouper, then sent for us to discuss his worsening kidney functions.

 Dr. Supermodel is one of those "touch your shoulder" while he talks kind of doctor and honestly, it was hard to concentrate on what he was saying. Just kidding, I fully heard everything, including his creatinine levels being too high and the possibility of his kidneys shutting down. He decided it best to place Trouper on slow moving dialysis, probably for only a few days, to help his kidneys filter all the fluid being built up. His poor kidneys just couldn't keep up so they added another line in his neck, and started dialysis. Slow acting is a little different then the kind people get every few days at their local dialysis clinic, and it's continuous 24/7. It's easier on the body and in Trouper's current situation, we needed any and all treatments to be as smooth as possible. At Piedmont, they name all their dialysis machines and Troup got Britney Spears. Her picture showed the young, 18 year old  "Hit Me One More Time" Britney and not the crazy, shave your head Britney. I figured Trouper would have thought it was funnier if it had been crazy Britney machine but at least he didn't have the Michael Jackson unit, that's just sad and depressing. The machine was big and a little noisy, and the nurses were constantly having to change out the bags and adjust settings. We saw Dr. Supermodel several times a day, and I noticed it wasn't just the females in our group that were enchanted by him, the nurses swooned, yes swooned, when he walked in.

My sister, Emily, Jake, Ryan, Mom and I went down the street to our favorite Atlanta Mexican restaurant, Uncle Julios. It was started in Texas and to date, after 14 years of searching, is the closest we have found to home in Georgia. It was nice to get out of the hospital, but a little sad to be at Trouper's favorite place. He is mesmerized by a painting of a little Chihuahua wearing a sombrero and has asked to buy it many times. I have no idea what his fascination with this paining is but it makes him happy so I have searched high and low for it and can never find a reprint. Mom has a friend whose a painter, so we took pictures on the off chance she could recreate it. It was fun, talking and laughing about his strange connection to that little dog and reminded us that laughter truly is the best medicine!

  

Lateral move and camping out....

Monday, February 18th was an eventful day, in good ways and bad. Troup developed pneumonia from all the fluid build-up, and was running a fever. His kidneys were having a difficult time as well, and they started mentioning dialysis. Each time a new doctor would visit us, it seemed like more bad news. Dr. Blincoe told us that they would be moving Troup to CCU, upstairs. Before we could get our hopes up, thinking he might be improving enough for a move, in his usually Dr. Blincoe way he told us it was a lateral move and would allow Troup's team better access to one another. I chose to ignore his usually "grimness" and believed that if they were moving him, he must be on the upswing. He was still in a medically induced coma, and still swollen from the massive amounts of fluid but going to CCU meant his own room, and a little privacy. It seemed like it took hours for them to get him upstairs, but when they did we were so excited, we had chairs and a place to visit with him! I remember it was a rainy, misty day but nothing was going to ruin the excitement of a room and chairs. It's the small victories that win the race and that day, our motto became "slow and steady wins the race".

Family and friends continued to fill the waiting rooms, and once we were upstairs, we took over our own little area. We filled it with blankets, pillows, snacks and drinks. There was a sign that said "No Eating or Drinking Allowed" however my sister's coat needed a resting spot and conveniently, it covered the sign quite nicely. We decided to take turns spending the night, just in case something happened and they needed a family member. Mom, Kyna, Don, Teresa, Jim and Sue got hotel rooms about a mile from the hospital, just in case someone needed a quick nap, or some down time. People brought snacks, and food, and we quickly became friends with the cafeteria staff; especially Doris, who makes the best grilled cheese sandwiches in the world! Those first few days, Emily's boyfriend Jake never left us and quickly became endeared to the entire family. He was our runner, going on many trips to the cafeteria, or to CVS across the street. He also held Emily together, and I was glad he was there to comfort and love her. Ryan, who loves a good conversation, made a friend and would sit out front of the hospital, talking. His new friend was about 70 years old, and a patient. He would come by the waiting area and ask Ryan if he wanted to go out and talk. He told Ryan all about his military career and family, and Ryan told him about his Dad. When we went to the chapel, we saw he had asked for prayer for his friend Ryan's dad. Just another example of the sweet and loving children I have, they make friends wherever they go!

As the day progressed, they said his lungs were sounding a little better but his kidneys were in really bad shape. They said on Tuesday, we would meet Nephrologist who would talk to us about dialysis. They also said they would start considering removing the ballon that had been placed on Saturday to help his heart rest. His room was always really busy, but our friends, family and even the doctors and nurses were really good about giving the kids and I time alone. I think we all told him stories and secrets, just hoping he would wake up and give us that good old "Trouper" laugh.

Here is a picture of our "area". Emily brought her pooh bear pillow pet and if you look closely, you can see my sister in her "sleeping cubby". Piedmont, our home away from home!