Are You Ready?

Get yourself a cup of coffee, a box of tissues and settle in. I'm about to tell you what happened next...

As we were approaching Sam's hospital room, we saw them wheeling him in on a gurney. He was so tiny compared to the enormous bed. He was coming out of his drug-induced sleep and immediately recognized me. I walked as quickly as I could to him, my head pounding with every step.

They hooked him up to the heart monitor in the room and carefully moved him to his bed. That's when it happened. We were barely in the room.

Bam - he was obviously shocked by his new defibrillator, his body went rigid for a second. He immediately began crying this deep, hoarse, gut-wrenching cry. We didn't know what was happening. One of the nurses said it was because he had gotten too excited and his heart was beating too quickly.

Take yourself out of the picture for a moment - even I had the brains to understand that if they had set the settings so low he couldn't even get excited, we were in for a lot of hard days ahead. That would mean that if he cried, even for a couple minutes, he would get shocked. Really?? What moronic doctor would be okay with that? Certainly not Dr. Buck.

Back in the room, Sam is hysterical and we were upset too. All I could do was to lean my head over his body so he could wrap his hands and arms in my hair for security. I heard a nurse distantly say that I might feel a shock too. Bam, another shock, only Sam felt it. Sam started screaming harder now. Bam, another one. Bam. Bam. Bam. Bam.

One of the nurses told Bill this was "nothing to freak out over." I believe his exact words to her were, "I beg to differ with you, this is EXACTLY something to freak out over." Bill was demanding our doctor over and over. I had a brief moment to look up from the death grip Sam had on my neck and saw my mother-in-law and my twin brother standing with white faces, completely helpless, on the other side of the glass. I remember my sister-in-law's parents running down the hall to the room. Bam, hit again. Sam was screaming in my ear. Bam. Bam.

The heart monitor showed his heart rate at 125 beats per minute. I knew from what Dr. Buck told me that his defibrillator was set to go off at 230 beats. Why was it constantly shocking him?

Here is my 11 month-old son, completely helpless, his chest recently cut open, bandages all over him, and he is screaming and aching all over - because of me. That was all I could think. He lived a happy life before this moment. Maybe the defibrillator was the wrong choice. Maybe he would have been better off without it. Why did I do this to him? Did we hear the Lord wrong when we prayed about it and decided, so quickly, to implant a defibrillator in his tiny body?

Twenty four minutes passed. He was shocked 22 times. Twenty two. Did you read that? Twenty two. He barely weighed 18 pounds. My eleven month-old child was struck twenty two times with electricity directly to his tiny heart.

Dr. Buck came running into the room with something that looked like a hard-shelled briefcase. Little did we know that that briefcase would become an extremely familiar part of our lives.

He opened it up and it was more like a laptop. It had a computer mouse-looking object with a cord attaching it to the machine. He held it over Sam's belly, where the defibrillator had been implanted, and turned the device off. The device can be completely controlled by this computer, without having to go back into his body. I was relieved. The adrenaline started to wear off and my head was pounding. I was shaking all over and could barely stand up. I collapsed on the couch behind me and Bill took over comforting Sam.

I'm sure Bill felt mixed emotions during this time. He wasn't the one hugging Sam while he was being shocked, I was. It was my choice and I don't think any mother reading this would have made a different decision. But, I physically wouldn't let Bill get near him, because I needed to be the one to hold him and comfort him. There were moments that I would reach my hand out and we would hold hands. But, something inside of me took over - some sort of innate mothering instinct. Bill could only be the logical one, the one to demand a doctor, the one to lay his hand on my back, the stable one. It killed him that he couldn't hold Sam because I wouldn't let him. I wouldn't let anyone. It took a toll on us and we argued about it a lot in the days after.

It is extremely important to talk through these things with your spouse before a trying time occurs. There needs to be a game plan, a method to your madness. So that no matter how difficult the situation, you present a united front. We know that now.

Sam somehow fell asleep. He was on so much morphine, they told us he'd never remember what happened. That didn't help us sleep better though. Dr. Buck told us he'd been shocked 22 times in 24 minutes. After hours of sifting through the strips and trying to figure out what happened, we still had no answers.

I looked Dr. Buck in the eyes and asked him if we had made a mistake. I can still remember the look of surprise he had on his face. He said in all certainty that Sam would die without it. That was enough for me.

He left the monitoring part of the device on, but turned the "therapy" part off. It wouldn't shock him again. He gave us a blue, three inch-in-diameter, magnetic doughnut. He left two with the nurses as well. If something happened, we were instructed to hold the doughnut over Sam's belly and it would suspend the therapies. But, Dr. Buck said, nothing would happen because he turned the therapy side off.

Meanwhile, the infectious disease doctor of UNC hospitals got wind that I had viral meningitis and was in the pediatric step-down unit of the hospital. We were told I might be asked to leave. I was about to open my mouth and say something I'd regret, when Bill said we'd cooperate fully with the hospital. When I told the doctor, via the telephone, that my ID doctor at Rex said I wasn't contagious and which is why he released me, she said she knew him and completely trusted his opinion. She called him and verified my story and I wasn't asked to leave. Praise God. A small victory.

Sam was in and out of consciousness, his small face starting to swell from the surgery on his tiny body. I was told I could nurse him as soon as he wanted, and at first, I sat in a chair and pulled him down with me. Eventually, I learned that I could crawl up into his crib and lay down to nurse him. I slept there with him for most of the days following, keeping him as physically close to me as I could.

Within hours of the surgery, he had his first bowel movement. You may think it's odd that I post this, but that is a huge fete for anyone, let alone a small child. It normally takes days after a surgery. Within 24 hours, he had his second.

Keep in mind, again, that he has an adult-sized defibrillator in him. Adults get them implanted in their upper right or left chest, next to the shoulder. Sam didn't have any space in his body that would contain a hockey-sized device, and therefore it went into his belly. They had to move intestines to get it to fit. This is yet another reason why him having bowel movements was a huge event.

Twenty four hours after the surgery, he was sitting up. Forty eight hours later, he was pulling himself up using the crib bars. Within three days, he was using the crib bars to walk - something he had never done before in his life. One of the doctors making rounds said in his 30-plus years of being a doctor, he had never seen anyone recover so quickly. I know that nursing him helped. That combined with many many prayers and Sam didn't stand a chance - he was going to recover quickly.

Every day we would get a visit or two from Dr. Buck and Dr. Stewart. Dr. Buck had sent Sam's ECG strips to the Medtronics home plant in Minnesota. Every available worker was sifting through algorithms trying to decipher what went wrong.

Dr. Buck was extremely protective of our family. If the cafeteria forgot to bring us food, he would call them or tell the nurses on our behalf. He wanted us to leave the room and get brief breaks from our stressful situation.

After a couple days we learned his device had been double-counting his heartbeats. When it was really 125 beats per minute, the defib read 250bpm. It's not meant for an infant's body and just isn't equipped to handle the odd electricity that Sam's heart was producing, especially after surgery. We monitored how many more times it would have shocked him, had the therapy side been turned on, and it was at least 12 more times.

After several days, his body began to heal and the defib began to settle in to normal functions. After about five days, Dr. Buck said he wanted to turn it back on, to see what would happen. I said no. Bill agreed. We waited for another 24 hours. Then the day arrived - we turned the therapy side back on.

Nothing happened. We had the "magic" doughnut with us at all times. We were allowed to take Sam on little wagon rides around the floor - but always carried our magic doughnut. Adam and Kendall took Sam for a spin without us one time. It was about 10 minutes, but it was agony to be away from him. At the same time, it was the greatest relief I had had in two weeks.

Nothing happened.

The day finally came that we were released from the hospital. I was fifteen pounds lighter (at 114lbs), Bill was beaten down, but Sam's face wasn't as swollen. I was so scared. Bill was scared too. We both trust the Lord to carry us through this situation. In fact, I haven't mentioned how much prayer went into this time, but every single minute of every single day someone was praying for him. For us.

If you've been reading our blog for a while, you know the verses that we found most comforting come from Isaiah 43. "As you pass through the water, I will be with you. And the winds and the waves will not overcome you. Do not fear, for I have redeemed you. I have called you by name and you are Mine." We sang this song to Sam every day all day. We found solace in Him - comforted by the fact that He is the One who knitted Sam in my womb and created him with this heart condition. He, alone, knows the future - and how can we not trust Him, if He is the Author and Perfector of our faith?

I honestly don't know how people make it through these sorts of situations without the Lord. It has to be that much harder.

Our instructions were these: take him home, tend to his wound, carry the doughnut with him at all times, treat him normally, if his defib shocks him, call 911. That was it. No instruction manual or anything.

I know there are at least two mothers reading this who have children with heart conditions, one with a pacemaker, one soon to have a pacemaker. You two understand our situation better than anyone else. I find comfort in that. We are not alone.

We found out later that over 1000 people were praying for Sam, around the world. Wow.

In recounting this story, I haven't cried once...until today. In the past, every time I have sat down to write it down, I couldn't because I was crying too hard. Just a few weeks ago my mother asked me to tell her what really happened - what did Sam look like when he was having the seizure? what was it like in the hospital?, etc - I couldn't tell her.

I believe that I have reached a point now, though it is still tender, that I can see how beneficial it is for me to tell this story. Planting those irises on Friday has really affected me. As I told you before, they sat in a plastic bucket and had no nourishment, yet God allowed them to grow and even bloom. We spent the winter wondering what God had in store for our future, reading our Bibles daily and talking to wise counsel. We had nourishment from Him and we have bloomed where we've been planted. Though it was a hard winter, I'm glad we had the nourishment. If we hadn't, it would have been so much harder, but I'm certain He would have allowed us to bloom even still.

I'll tell you a little more in a couple days, so you can understand the whole picture of what happened. For now, wipe your eyes and find comfort in knowing we are okay. We're a bit rattled and Bill's and my marriage has changed form, but it's all for the better. Sam has been a huge blessing on our lives and we love him dearly. I am so grateful that God, in His wisdom, has chosen to keep him with us for now.

There's one more chapter left in this part of the story, by no means is it the last chapter.