Sunday, March 6, 2011

Our Future Rock Stars

This video was taken one afternoon in February. Alivia was still at school, but Stacey caught Avery and Aleah "rockin' out" to none other than 'Jesus Loves Me!' Enjoy!

Saturday, March 5, 2011

Another Miracle for the Johnson Family

Thursday night, as we prepared to leave for our first event with Make-A-Wish at the 'Canes game, I heard Alivia say, "Mommy, Daddy needs you." I called for Mark and could tell his voice didn't sound just right so I went to see what was needed. To my surprise, Mark was throwing-up blood. And so started a 72 hour adventure, trip to the ED and ultimately transfer to Duke.

Just before the girls and I arrived home from dance class, Mark had been eating a quick snack - a bowl of Kellogg's Crunchy Nut cereal - when he felt an intense pain and tearing sensation in the middle of his chest. Mark knows his body so well. He immediately knew that the cereal had torn his esophagus and insisted that I get him to the ED. Mark's on blood thinner and thus any issue with bleeding can be significant to stop. In shock, we hurriedly got the girls in the car and on our way to the hospital. Not exactly the fun "big girl" night we had planned with Alivia and Avery!

Daddy called me on the way to the hospital to tell me that this could be very serious, and if we had not left to call 9-1-1. We were half way there so I kept driving - I didn't tell anyone in the car, I just started driving a little faster. My aunt had added us to the prayer lists at several churches in Clayton and Stacey made sure our Aversboro Road family was praying. We did not know at the time how much we truly needed and coveted those prayers. I would soon have to call Mark's mom and dad and our Four Oaks family and churches would join in. I didn't want to alarm anyone, but knew I had to begin the calls...once I had him safely to the hospital.

Meme and Papa met us at the hospital. I am not sure what the girls understood. We tried not to alarm them and kept the ride as normal as possible. When we got to the hospital Avery's only comment was, "I told you I was going to stay with Meme tonight!" (as she flashed that devilish grin.) You see, while dropping off Aleah earlier in the evening, Avery had wanted to stay with Meme. I wanted her to go to the game because I knew she would enjoy it so much. She wasn't buying it and it took a lot of coaxing to get her back in the car. All in all they handled the transition like troopers - the Johnson girls' way. They take what comes and just keep going. I am so very proud of them.

Mark was right! After several hours and a full battery of questions and testing, they found a tear in Mark's esophagus just at the top of his stomach. He was in a tremendous amount of pain and had four doses of morphine over the first few hours. Over the years, I have learned to interpret how he is doing just by the color of his skin. He was not well. I mentioned to his nurse several times that his coloring was not right. He looked sick and I knew things were getting worse.

Our hearts sank when we were told the head of thoracic surgery was on his way in. Once there, he took us through our options and strongly recommended that since Mark has a significant heart history and all the care has been at Duke, we needed to transfer his care to Duke. We agreed and soon Mark was headed to Duke by ambulance - a first for him. The Rex Critical Care Transport team, who were friends of Papa, took great care transporting Mark.

Just before saying good-bye, Mark and I went through our list of all the things that must happen to keep our family going in the event he would be unable to help. This has become a tradition for us just before surgery. It helps Mark know that his family is taken care of in the event there are complications. I take copious notes and promise that all will be fine. Secretly inside, I was concerned this time on how the girls would take-in all of this. The last heart surgery happened when Alivia was a baby.

At 2:00 in the morning as I followed the ambulance, I covered Mark in prayer not exactly sure what would happen next. It gave me great comfort to be on the way to Duke but concerned me greatly to know he once again needed Duke. As I gathered my thoughts, I kept returning to the sermon Dr. Whaley preached just days before. The title was, "God will take care of you." I believed this was true...why should I doubt. He promises that when we fall at his knees and have faith he can move mountains. The Bible also tells us that when two or more join together in prayer God will answer. It may not always be the answer we want but He will answer. I remember thinking what a shame it was that most of our family, friends and true prayer warriors were asleep...when we needed prayer so desperately. It was just a passing thought that I remember thinking...stay tuned there's more to the story later on.

When I arrived at the 2200 unit at Duke, it was devastating to me to realize that he was being transferred to intensive care. For some reason, I had in my mind that this was a simple surgery...nothing like all we had been through over the years. I even had in my mind that assuming the surgery happened quickly I would surely be able to still make it for a surprise lunch with Alivia at school. The next few hours would prove me drastically wrong.

As I sat alone in the waiting room waiting for them to get Mark settled, I remember reflecting on how blessed I am to be Mark's wife and thinking about how many times over the years we have found ourselves at medical crossroads like this. It seemed like an eternity just waiting...

Finally, the nurse came to get me. Mark was in good spirits and updated me on the ambulance ride and the medical team waiting for him. On arrival eight people quickly went to work, making sure he was stable, getting vitals and setting a plan for his care. He was impressed; I was terrified. This was all, too, real. All too soon. The man in the bay next door was on an oscillating ventilator - the sound instantly took us back to Aleah's birth. Could we handle what would come next?

Not long after, the Surgical Fellow (doctor who is training under the surgeon) came in to give us an update. His news was grim. He had reviewed the reports sent over by Rex and thought Mark would surely need surgery this morning, although the head surgeon would make the final decision. He went on to explain that the recovery is very difficult. He told us to expect at least 7 days in the ICU, followed by a 6-8 week recovery. This was presented as a best case scenario. It could be worse.

They would go in on Mark's side, through his ribs, and repair the hole with muscle. He would have chest tubes to drain fluid and would have a feeding tube surgically placed in his stomach. He would need the feeding tube most likely for at least a month. No food or drink for a month. I was blown away. I remember asking the doctor to compare this to the recovery of open-heart and he said it was comparable...maybe even worse. The esophagus is hard to heal apparently and often causes infection. Mark has to be vigilant about infection in his body due to his titanium valve in his heart. WOW! We were not prepared for all of this. Once he left, we just looked at one another. This is not all the surgery - or recovery - I had imagined. Mark was devastated. I could see it in his eyes. Just the day before he was given a clean bill of health from Dr. Armstrong during his annual check-up. His heart was in great shape. We left Duke celebrating and now we found ourselves in ICU facing a major hurdle. We shared our thoughts. We knew all would be OK in the end...we had to put our trust in the Lord. We have weathered so many things...we just have to trust that there is a plan. Mark shared with me about the passages of scripture he read the night before in the book of Job. Passages about trials and God's promises.

Not long after, Mark's parents, sister and aunt arrived. We took them through the news we were digesting and shared more than a few tears. We all knew if anyone could overcome this Mark can...but why. We dreaded even the thoughts of what was to come and the long recovery.

Over the next few hours, Mark would go through another battery of tests. He was now up to four IVs running all kinds of things through him. How could this be? What would happen next?

The doctor returned to tell us that he had reviewed the CT scan and all the information once again. There was a chance the head surgeon would want to first let Mark's body try to respond...try to heal the tear, rather than doing surgery immediately. Praise the Lord...HOPE of a better way. We were overjoyed.

The head surgeon soon arrived to tell us that her recommendation would be to repeat the swallow test and if the test supported her theory, she wanted to give Mark's body the chance to heal on its own. Surgery was her third option. We agreed that this is the way we wanted to proceed. Once again...HOPE.

It was at this point we felt a turn. Mark's color was back to normal. The morphine was wearing off and he was not in nearly as much pain as before. Our prayers were being answered. Mark even felt well enough to take a walk around the unit (under supervision, of course) and out to the waiting room. During his "field trip" Mark talked to Ma Ma (his grandmother.) She had received a call around 2:00 am from Scott (Mark's cousin). He strongly felt Ma Ma should know what was happening. It is often that she isn't told out about major surgeries until after all is said and done. Ma Ma had started praying for healing on her knees at 2:00 am and had continued until this conversation! Our head prayer warrior was awake! She was making her requests known to God at the very time I was worried about our prayer warriors being asleep. She was "joining" me in covering Mark with prayer...and I didn't even know it.

The next few hours are a blur (missing a complete night of sleep has that effect.) I do remember that he kept getting better and better. The swallow test was repeated and I remember his smile when he returned to the ICU room and told me the good news...the tear was was all closed up... We knew immediately that the Lord had worked a miracle. The medical team was shocked...they had never seen someone heal so quickly. Overjoyed is an understatement. To be in the presence of a miracle is humbling. The Lord promises to take care of us...and that he had done. Medical science cannot explain this speedy recovery.

Mark was sent to a step-down room by mid-afternoon...three days ahead of schedule. He still was not allowed to have food or drink for an estimated 3-5 days. After coaxing from Mark's mom and Aunt, and because he was doing so well, I headed to Meme's to spend the night with the girls. They needed me.

All while the days events at Duke unfolded, another drama was happening at home...No, we never do anything the easy way. By 9:30 am Alivia was sent home with a fever- Stacey actually never left her at school, next came Avery just before preschool was over and Aleah followed. They have 5th disease or "slapped check" a childhood illness that turns your checks bright red, along with a lacy full body rash and fever. One of the days text messages from my Mom indicated that Alivia's fever was 102.2, Avery's was 100.7 and Aleah's was 99.4. Whew...deep breath.

I got home to find them playing happily. Despite feeling so bad, they had had a great day with Meme. Thank you Lord for the most precious children (and Niece) and best family in the world. Christa is an added bonus to have around while at Meme and Papa's. We loaded the girls up and were off to Mommy and Daddy's bed for a night of snuggles. We slept really good.

I was overjoyed again when I called Mark this morning. He sounded great...which took away some of the guilt of having to leave him at the hospital. (This was the first time I have ever left to go home during a hospital stay.)

Dr. Tong, the head surgeon, was going out of town for the weekend. The on-call doctor who is covering for her reviewed the scans this morning and said it appeared that the tear was never there it was completely undetectable! WOW...we serve a MIGHTY GOD!

Even better, they had decided to try chicken broth and jello for breakfast! (Not exactly our normal Saturday morning full breakfast, but food none the less!) He would get a full lunch, dinner and breakfast on Sunday and if all went well he will be discharged. What a ride!

Once again, pouring out the thoughts in my head, the journey we have travelled and the work of our Lord has been therapeutic. Thanks for reading and thank you for your prayers! I know that God has an incredible plan for Mark and our family. We are richly blessed.


Friday, February 25, 2011

When You Wish Upon a Star...

Ten years ago tomorrow, I started working at Duke Children's Hospital & Health Center. I have loved being a part of this amazing place of hope and miracles. Duke Children's will always have a special place in my heart. We will always be connected...they have saved Mark time and time again and the research saved Aleah's life. But our relationship is changing, today was my last day as an employee.

It is hard to believe. The memories -- both good and trying -- bring both laughter and tears. It has been an amazing journey full of learning experiences and surprises along the way. I cherish those memories they have helped make me who I am. They have taught me how important it is to devote yourself to a cause you believe in, the power of one person dedicated to make a difference can change the world and the strength of those going through trials, especially children. I remember hundreds of patients and their families. I am humbled to have spent 10 years working with MIX 101.5 and the Radiothon for Duke Children's ($13 million and counting...we are still celebrating that milestone!) I cherish those friendships of patient families, MIX and all those I have worked with..and I am not going far.

Beginning on March 15, I will be the new CEO at the Make-A-Wish Foundation of Eastern North Carolina. I am thrilled with the opportunity and overjoyed to be continuing to work on behalf of young patients. Now, I will be helping bring smiles to their lives through the power of a wish come true. The potential is great and I am excited to be joining a dynamic team of passionate people devoted to helping children. I can't think of a better organization!

My new e-mail is Please keep in touch!

Saturday, December 4, 2010

Happy Birthday Baby Lu!

Yes, it is hard to believe. Baby Lu-Lu turns 4 today! I constantly find myself thinking "where has the time gone?" Avery Kamdyn Johnson entered the world on December 4, 20o6, bringing smiles to our faces and laughter to our hearts...and she hasn't stopped since. She can light up a room with her bright smile, twinkling eyes and infectious laughter. She is sweet, curious, smart, charming and really funny. Avery knows just what to say to make us laugh. Her new favorite past time is making up new words for songs...just to make us laugh. "Silent Night, to the left and right" was a favorite while practicing for the Christmas musical. She loves to sing and dance and play her guitar. She loves to play mommy with her babies...and her sisters. When she grows up she wants to a doctor and a mommy...and a beautiful princess ballerina. (And I know she will be great at all of that.) Her favorite colors are pink and purple and she loves to color. While at her Thanksgiving breakfast at school a friend's mother could not believe the Turkey she had colored. She had taken her time and colored every inch of the turkey...apparently working on it in class at various times for three days...while other children had quickly scribbled a few lines and were done. Looking around the room at the other Turkeys it was uncanny how Avery's stood out. Avery you are very talented and we love how hard you work to do your best. Mommy, Daddy, Alivia and Aleah are so very proud of you! We love you so very much Avery Lu-Lu Kamdyn! What a special girl to have a birthday party at the hotel, breakfast at McDonald's (complete with candle in a hash brown), SNOW on your birthday, a breakfast brunch with all your family on Sunday, and a super fun bouncy birthday bash with your friends! Happy Birthday to our favorite 4 year old middle baby bear!

Thursday, November 25, 2010

Happy Thanksgiving!

I am very thankful for so many things...

I am blessed to be the wife of an amazing man who loves me unconditionally.

I am blessed to be mommy to the most precious three little girls in the world.

I am blessed to be Kiki to the most wonderful neice.

I am blessed to be surrounded by family and friends who love me.

I am blessed to be able to freely worship the Lord in a land where we enjoy so many freedoms thanks to those who care enough to protect our ideals.

I am blessed to be touched by so many children at home, church, work and dance.

I am thankful for all God's blessings on my life and most importantly for His grace.

Thank you Lord for your goodness. Happy Thanksgiving!

Thursday, October 21, 2010

Love is sharing cotton candy.

Love is letting your sister be the "Mommy" this time.

Love is helping pick out your sister's clothes.

Love is helping Mommy hold your sister down to take her medicine.

Love is holding your sister's hand in a scary situation.

Love is knowing that your sister doesn't "look" right and asking quickly for help.

These are real examples of our girls showing love one to another. For those of you who are not in our daily lives, let me fill you in on the events from yesterday afternoon.

I got a call from Stacey, who cares for our girls each afternoon, that Aleah had not been herself. Stacey could not put her finger on what was wrong but she sensed that Aleah was getting sick. She had checked her temperature. It was normal. In the couple minutes we were on the phone discussing Aleah's s day and me trying to convince Stacey that it was most likely just teething pain -- Aleah has four top teeth bulging under her top gums--our lives were turned upside down. In a matter of minutes while talking to me, Stacey changed from thinking she would take Aleah by the pediatrician after carpool, to deciding to turn her car around to head straight to the doctor. Then suddenly I hear "I'm calling 9-1-1"

That was how the ordeal started. As I frantically tried to reach Mark, I grabbed my keys, purse and was out the door. Hwy 47 and I-40 were a blur. I was on a mission. A mission to get to my little girl. I didn't really know what was happening, but I knew that I needed to be there...and quickly.

On the other end, as Stacey was talking to me on the phone she heard Avery, who is 3 years old, exclaim, "Ms. Stacey Aleah looks funny. She is not right." Stacey looked up into the rear view mirror. Aleah was shaking and turning blue. Stacey quickly pulled into the parking lot of a doctor's offife, called 9-1-1 and ran inside.

The ambulance arrived and got her stabilized. As they woked on her, Avery held her hand. Aleah soon would take her first ambulance ride to the hospital alone. (They would not let Avery and Stacey ride.)

Meanwhile, Mark and I rushed from work to the hospital not knowing what was happening. I don't remember driving...and thank the Lord for getting me there safely. We both made it to the hospital before her grand arrival. Mark's Aunt Sue was there waiting. We waited what seemed like an eternity.

My heart sank as the ambulance pulled in at the ED. What would we find inside? How was our little girl? Visions of breathing tubes and ventilators filled my imagination--memories I was not ready to relive--not here, not now, not ever. The abulance door opened as I wiped tears from my eyes...sitting inside perched up high in her car seat on top of the stretcher was our little Aleah smiling and waving! Really...I thought...the EMT must have seen it in my eyes as he chuckled and said, "Mrs. Johnson, she really was in bad shape. She looks great now."

She had been bluer than anyone he had ever seen. She had spiked a fever and had a seizure in response. Because she was in her car seat with her head to the side, we think her tongue must have been covering her airway.

After several hours of testing, antibiotics and trying to keep a one-year-old entertained we were released from the hospital (thankfully she had assembled a big fan club and enjoyed visits from MeMe, PaPa, Grandma and Granddaddy.) Cost of the high-power antibiotics=$150 (after insurance); Cost of the anbulance ride and ED visit=$250; Cost to have Aleah home in our arms=Priceless! What an afternoon and evening

Thankfully, it was only a urinary track infection that caused the fever. It is apparently very common to have a fever spike and seizure follow. We were told to watch her closely for fever and medicate quickly. Once a child seizes with fever it often reocurrs with fever until the child is 4 or 5! Here we go!

Aleah has only been in our lives for a little more than a year and she has raked up a NICU stay and two ED visits. Yes, she rules the roost around here! Aleah makes herself known. :)

We are blessed and thankful for all three of our little girls.