rollercoasterride

Whenever I went in to visit Lacy, I brought my headphones to put up to his ears so he could hear the only song on the tape--our song, Love Can Build A Bridge. I knew he could hear it. His heart rate on the monitor changed every time I played the tape.

I don't know where we found the strength to carry on while we waited for news that Lacy's heart had rested enough to avoid a transplant. Our home was a small corner of the Cardiac Unit waiting room. We had breakfast, lunch and dinner there. I asked everyone who came to visit to add an entry in the hournal. We met with the Transplant Coordinator who briefly explained the Transplant Team. We would meet the entire team when (if) it was determined that Lacy would definately need a transplant.

On August 11th, Lacy was taken back to the OR to have the VAM removed and his chest closed up. As they wheeled him passed me, they stopped momentarily and I gently kissed him on the forehead. I knew this was the moment we had all hoped for and yet dreaded most. If Lacy's heart continues to beat at a feverish pace, there would be no choice. Without a transplant, he would die. I felt so helpless. All I could do was cry....and wait.

The hours crawled by as we awaited word. Finally, across the glassed in atrium, I saw the surgical team as they stepped off the elevator with Lacy. The surgeon arrive first to tell us Lacy's heart rate had returned to normal. I looked at Gary through misty eyes to see tears rolling down his cheeks.

After spending another 24 hours in the CICU, we returned to the PICU to recuperate and wait for our "walking papers".

We continued our daily routine for the next two weeks. Finally Lacy was given the green light to go home! The doctor grinned as he said "It's been a long haul, Lacy. Just make sure we see you again in two weeks!" I was ecstatic! Nothing I had ever been through or done could have ever prepared me for the roller coaster of emotions we felt during the past two weeks. I was grateful the ride was finally over!

Lacy continued to recuperate at home, making progress every day. Or so we thought. At his two week checkup, the doctors determined the newly placed valves were already leaking. The chief cardiologist on Lacy's team told us "We have no choice but to do a heart transplant."

On September 13, 1995 we officially placed Lacy on the Heart Transplant Waiting List.

Fifteen minutes passed, then a half an hour. Gary resumed his pacing. He demanded to know what was going on. Out of nowhere, Lacy's cardiologist was there explaining they were taking Lacy back for emergency surgery. His heart was racing at over 200 beats per minute. His heart was literally about to explode. This surgey would attach a ventricle assist machine to his heart allowing the weak side of his heart to completely rest and recuperate. There was a risk. His chest would remain open during the time he was attached to the machine. The risk of infection was dangerously high. In addition to that, he would not be returned to PICU because they were not equipped to handle this situation. We were sent to the Cardiac wing to await Lacy's return. It was 10 pm.

"Dear God, how can this be happening?" I thought as we literally ran to the Cardiac Wing. I had been so optimistic ever since the surgery had been scheduled months before. Now I was terrified but felt I had to be strong for Gary. He had always been there for Lacy and had never had anyone to lean on until now. It was up to me to be strong for him.

The cardiac waiting area was set up for short visits with a glassed in balcony open to the atrium. Time, however did not move any quicker there.

When the surgeon finally came to speak with us, he explained the purpose of the ventricle assist machine. We were told a patient couldn't be on it for more than 72 hours. "If after the 72 hours, Lacy's heart continues to beat too rapidly, we have no choice but to do an immediate heart transplant. We will make arrangements for you to meet with the Transplant Team in the morning."

I just could not believe what I was hearing! I looked over at Gary. I thought he was going to pass out. His face turned ashen and his eyes filled with tears. as he whispered, "I dont care what it takes, just save my boy." I turned away as my eyes filled with tears.

The surgeon stood up, shook Gary's hand and disappeared. I was too numb to speak. We sat there in shocked silence each lost in our own thoughts. I thought of what our lives would be like without Lacy. He was such a charmer. What would we tell Gary Jr? How would we be able to tell Lacy he has a new heart when he finally does wake up? "Lord, please give me the strength and courage to make it through these next few days." I whispered.

Lacy came back to the Cardiac Intensive Care Unit about 2:30 in the morning. We left the hospital for home at four only to return with Gary Jr at 9 am. Gary had explained to JR what had gone on at the hospital. From that moment on, for the entire two-week hospital stay, Gary Jr. took his role as the big brother very seriously. Watching him goto the visiotr's telephone to call the nurse's station to ask to see Lacy was heart wrenching. (Gary Jr. had been diagnosed with brain cancer in 1988, leaving him physically challenged and dependant on a wheel chair for mobility.)

For me, the days Lacy spent immobilized in a chemically induced coma while hooked to the VAM were the most difficult to endure. The stench of old blood blanketed the room. Breathing sickened me but I couldnt forget the promise I had made to Lacy. The words "I'll never leave you, No matter what!" now haunted me.

"So was that the delay?" I asked. "No," Gary said visibly shaking. While the surgeon was trying to cut through the scar tissue, he accidentally knicked Lacy's jugular. In order to stop the bleeding so it could be sitched, they had to slow his heart to near death. I was shocked but still had every confidence that Lacy would be returning to the PICU momentarily. This was, after all, a routine repair and replace with a minor setback. Another hour crawled by.

The roar of the engines was deafening as the Medivac Helicopter landed on the hospital roof just above the Pediatric ICU. The soft purple-red hues of the days final light filtering softly through the only window painted a sharp contrast to the stark, antiseptic of-white walls of the tiny waiting room.

Gary had taken up watch just outside the electric doors of the PICU in order to catch a glimpse of Lacy when they wheeled him back from the OR. He was pacing. I stationed myself in a chair where I could keep an eye on him and still see when the pay phone was free so I could call home. Lacy had now been in surgery for eight hours!

Finally, the surgical team representative came in to say Lacy was on his way back to PICU and as soon as they settled him in we would be allowed to see him. "That shouldn't take more than fifteen minutes" the representative stated. The surgery had gone well even with the accidental knick on Lacy's neck.

For me, August 8, 1995 started out like any other day. The sun shone just as bright, the air was just as thick and I felt just as sticky as I had every other morning that summer. As I made the first entry into the journal I would keep and eventually give to Lacy as a memory of his fifth open-heart surgery, it was with an unabashed optimism that I noted as poetically as I could, the beauty of the fine August morning (in spite of the thickness of the air).

It was my parent's 47th wedding anniversary. I made a mental note to call them later that afternoon when we arrived back home. Since this surgery was to be a simple repair and replace, Gary Junior was left at home to tend to the dogs and wait for us to call with an update on how the surgery had gone. "I'll call you by 2 pm, Gary" Lacy called over his shoulder as he walked out the door. As I hugged JR good-bye I reminded him we'd bring dinner home.

At the hospital, we were brought into a waiting area where we were "prepared" for surgery. Information was taken, pills given out, urine and blood drawn. Gary Sr. reminded the nurse that Lacy has no artery in his right arm so no procedures could be done in that arm. I carefully noted every last detail in my journal. Enthusiastically (and quite pleased with myself) I told Lacy "Someday you'll want to write your story. All the facts will be right here in this journal."

Lacy relaxed as the pre-surgery medications began to take effect. Finally, the moment arrived when we had to "hand him over" to the surgeon. I hugged Lacy and said "It's only a repair and replace, we'll see you at 2! I love you!" Lacy gave Daddy one last hug and then he was gone through the double doors to surgery. When Gary Sr. finally turned from the doors, his eyes were filled with tears. I looked away. Through the tears I tried to make another entry in my journal.

I had packed a "busy bag" for myself filled with things to pass the time. I took out the blanket I was crocheting for Gary Jr. As I crocheted, the minutes crawled by, seeming like hours making the wait unbearable. Finally, someone from the surgical team came out to say the team was just beginning to work on the scar tissue. I looked at the clock. An hour had crawled by.

I was making another entry in the journal when Gary began pacing. He felt there should have been some word by now. "I'm sure as soon as te surgeon is done, He'll come out and give you an update and let you know when Lacy will be back in the PICU so you can see him". Before I could finish my sentence, Gary darted off to find someone who could tell him what was going on. He was so sure something was wrong.

After what seemed an eternity, the surgical team's representative was back. Gary jumped up to meet him as he came through the door. From across the room I watched with a strange curiosity the two men in conversation. Gary was a "professional" Heart Dad. After all, he too had survived four of Lacy's open-heart surgeries already. Gary shook his head in understanding each time something was explained. When the two men parted company, Gary came over to say "There was more scar tissue than we anticipated."