You Asked For It...

Here is the rest of our saga.

Once Sam was released from the hospital, as I mentioned before, we had 24 hours of having a heart monitor attached to him. It came with a little purse and we carried it around behind him wherever he walked. Here's some video of it that I took from my Motorola back at the hospital (it's low quality and short):

So, you can see, it was a short leash and we had to keep up with him everywhere.

After the 24 hours were up, we removed the heart monitor and mailed it back to the appropriate people. We had set up an appointment with Dr. Buck, a pediatric rhythm cardiology specialist. All we knew was that we were supposed to hear the results from all the ECGs they took at the UNC Hospital during our stay there.

We had a lot of people praying for the situation. We saw Sam's pediatrician and he told us this was probably nothing and that most children have febrile seizures. After working with him over the following six months, we realized that he really tries to downplay the severity of a situation in order to keep us from worrying.

Here's an email I got from Cindy Bush, a friend of ours, who was apparently struck by the Holy Spirit on exactly what I needed to hear:

We understand about waiting on our Lord's perfect plan. Continue to look forward rather than backwards asking "Why". As long as we ask our Lord we will learn what He wants us to know. It also keeps us looking for the answers. We have seen them in so many ways. Waiting leads to disappointment sometimes, but it also leads to knowledge and wisdom. I am so glad you were here when this occurred.

She knew about disappointment, as her husband had been diagnosed with cancer about a year before this, and passed away early this year. She's the only one who told me I might be disappointed. I am really grateful for it.

We left the hospital on a Wednesday. His appointment with Dr. Buck was for that Friday. When I woke up on Thursday morning I had a pounding headache. Nothing I did would relieve this headache. I called my doctor and he said I should take some Alleve and rest some. He thought it might be a migraine. Sitting up hurt. Which meant nursing Sam hurt even more. I had to hold him in my arms and I could barely sit without shaking all over. I kept telling Bill how badly my head hurt, but I'm a big complainer and I don't think he knew I was describing the worst headache I'd ever had. I called the doctor back and he said if it hadn't gotten better by evening, to go to the ER.

By 8pm, Sam was in bed and I was in trouble. I told Bill we had to call my sister-in-law over to watch Sam while we went to the emergency room. You can only imagine how bad my head must have hurt, because I was about to leave a child who had been in such a serious condition with someone who wasn't me.

Bill took me to the ER and I couldn't even stand up. They finally got a wheelchair for me, but I had to lean over in it. When a nurse mentioned meningitis, I was immediately rushed back to see a doctor. This doctor wanted to do a spinal tap on me and said if there were only a few white blood cells, he would send me home with instructions to rest. I absolutely refused any medication, due to nursing, but I knew we needed to get to the bottom of the headache.

They did a CT scan on me and it came up clear. Then they did a spinal tap. I sat up and leaned on Bill's arms with my back arched. I jerked up a bit when the needle went into my back and Bill AND the doctor both were stern with me. It's very important to remain perfectly still for this. Once he started pulling my spinal fluid out, I began to pass out. I think it was a vesovegal response. It took me a while to recover.

Bill and I were talking with each other about how crazy this situation was when the doctor came back into the room. He said he was sorry to say I had full-blown viral meningitis. I wasn't going to leave the hospital for several days AND I was now in quarantine. He finally told me that he wasn't going to allow me to deny medication - I would have to pump (and dump) my milk for several days, but he strongly recommended I take something for the intense pain.

The only room they had for me in the hospital was in the children's wing. I was immediately transferred, with a mask over my face and everyone around me wore masks too. Anyone who came to visit me also had to wear a mask. After a couple days, the infectious disease doctor said this was only a precaution - it is bacterial meningitis that is super contagious.

As soon as Bill left, I called my mother. It was 2am and I was on drugs - big time. I still had a headache too, but was much better when I laid down. My mother couldn't believe what was happening - she had recently moved to Thailand and had no control over the situation. She felt useless. I told her, again, we didn't need her to come home - I couldn't imagine her jet lagging would help us at all.

Every three hours, I would swing my feet to the edge of the bed and sit up to pump. My head would pound and pound, but I had no choice. I was determined to nurse Sam through whatever was going to come - he needed the immunities that only I could give him.

The next afternoon, Bill showed up. He had called his mother to come help and she was already with Adam and Kendall taking care of Sam. Bill had had the appointment with Dr. Buck that morning.

To hear Bill tell the story is very sad. He said he was sitting there with a 10 month-old baby, his wife in the hospital with viral meningitis, when Dr. Buck said, "Your son has a rare heart condition and needs an internal defibrillator implanted as soon as possible. His life could be threatened some time between now and the time it's implanted, so you'll need to have a heart monitor at home too." Bill said he thought Dr. Buck felt sorry for him - knowing what a difficult time this was. But, as always, he was very gentle and extremely encouraging.

Bill came to visit me on Friday afternoon. I had been organizing meals from my hospital bed, doped up on painkillers, but wanting to provide for my family. Bill said it was the most appropriate time to tell me something so horrific - I was completely drugged.

He said, as I recall, that Sam has something called Brugada Syndrome and needs heart surgery immediately. My response was, "alright, let's do it." Nothing else. No crying, no screaming. My head hurt so bad - I couldn't respond.

I wasn't released until Saturday afternoon. Bill carried me to a bed downstairs in our home and brought Sam to me. I had never been away from him before that time and he had been missing me a lot. I gave him a bottle of formula and loved on him.

The doctors told me it would be another several weeks before I would feel better and at least a week before my head would stop hurting. I took medication for only two days, but knew Sam needed my milk in order to recover as best as he could from an operation.

Every night, Bill would hook Sam up to a heart monitor upstairs. And every night, when Sam tossed and turned, the heart monitor would beep like crazy. Bill said his feet hit the ground and he was beside Sam's crib to see if he was dead within a half a second. Everyone was on edge.

Our church really took care of us, especially our Sunday School class. Every meal was provided, including snacks for Sam. The surgery was scheduled for the following Wednesday morning. Tuesday was the orientation at the hospital. I couldn't even stand up on Tuesday and thus, I laid in a dark room all by myself while Bill, his mother and Sam went to the hospital. I cried and cried until there were no tears left. Then I cried some more.

On Wednesday morning, we all caravaned to UNC hospital. I laid my seat back as far as it would go. Bill called his father from the car to tell him what happened. Every family member of ours on both sides needed to get an ECG to check for Brugada Syndrome.

We took Sam back to get him dressed and talk to the pre-op folks. They let Sam have a little toy from the waiting room - an apple that made beautiful music. We still have it sitting on his window sill. He wouldn't let go of it through his whole stay. Dr. Stewart, the surgeon, came in to talk to us. I told him my brain was swollen or something crazy like that. I can only remember him laughing about it days later and don't remember actually saying it. They took Sam back and he gladly went to them.

We waited in the waiting room for hours and hours. It took a lot longer to perform the surgery than they thought. Apparently, they couldn't get a good location for the leads on Sam's heart. Because his heart is so messed up, electrically speaking, all of the connections were too poor. Once they finally had the leads attached, they had to actually send his heart into tachycardia. I didn't realize this part - they actually had to test the integrity of the device. It makes sense now, but I never put two and two together.

Sam's heart is very strong. It wouldn't go into tachycardia. They tried eight times and it was only on the 8th time they finally got a sustained tachycardia and the device shocked him. They tried two more times after that and felt that the system was reliable.

I laid on the floor of the waiting room with my brother, mother-in-law and Bill, eating tuna fish sandwiches that someone from church made. We were all on pins and needles. Dr. Buck and Dr. Stewart came into the waiting room talking and smiling. Dr. Stewart said he had never worked on a heart so little. They were very happy with the results.

We were relieved and they told us where to find our son. We went up to the step-down unit to see him.

Nothing could have prepared us for the horror of what happened next. Absolutely nothing.