You can read Part 1 here
After arriving home with my wife, we made hasty arrangements for our other children to be cared for. It was hard, explaining to our young children why their brother had not come home yet. We didn’t lie to them, but we didn’t want to overburden their little hearts. We said that their brother was sick and that he would be home as soon as he was better. They seemed concerned, but were soon back to playing with toys and excited that Grandma was going to be watching them for a while.
As soon as Grandma arrived, my wife and I jumped back into the car to be with our son. The hospital had called while we were home and reported that he was not doing well. On the drive down, my wife and I talked some, but mostly listened to some brooding songs from the latest Jars of Clay CD. It was cold outside and the slow, brooding, acoustic based music seemed to fit our emotional state.
We arrived back at the Children’s Hospital, parked the car and embarked to see our son. We also were scheduled to meet the head Doctor leading the effort to save our son.
The Gentle Doctor
As we stepped off the elevator, we were greeted and quickly escorted to our son’s bedside. I already felt like this had become my second home, having already spent the night at his side.
He was still alive, but barely. Not only was his oxygen low, but he was now fighting a “super bug” that was very deadly. His heart rate was up too high…..a nurse would adjust something and his heart rate would stabilize but his oxygen would dive. I could tell that a high level of concern was occupying the nurses tending him and his many machines.
After a few minutes, the head Doctor arrived to introduce himself. He was a middle aged man, dark skin, gentle voice with a slight Indian accent. As we talked, he very patiently explained that our son’s condition was very common. He then asked, in his gentle voice, if we wanted the good news or bad news first.
We both said “Good news…please!”.
The good news was that 90% of the children that have my son’s condition will eventually recover and the recovery will be 100%. In other words, he would go home and grow up and this event would have no long term effects on his health. We were relieved to hear it.
“But what’s the bad news?” I asked.
The Doctor lowered his voice a little and said,
“The bad news, is that the other 10% that do not recover, die. No exceptions, either he recovers fully or he will eventually die. At some point, if his body does not take over the proper intake of oxygen, the extra oxygen we are now using to keep him alive will saturate and poison him. It’s not like he can go home with a breathing machine. Either he recovers or he never goes home. Do you understand what I am saying?”
That is bad news. It’s devastating news. Even a 90% chance of life means a 10% chance of death. Oh God, Oh God……
We asked a few more questions. The Doctor was incredibly patient to answer us and explain what they were doing to help and why. On another level, this Doctor had just informed us that our son might die. But he was so gentle and reassuring. He exuded compassion and patience, and the fact that he had been so caring towards us made us both want to cry.
Over the next few days, I spent most of my waking hours at my son’s side. Some days he was stable, but other days were filled with machine alarms and nurses scrambling in and out of his room to sustain his life. I can’t even put into words the stress filled emotions that swarmed us in those moments.
When my wife and I weren’t in his room, we would wander the large hospital campus. It was huge, filled with children facing the most serious medical conditions. The entry way was filled with an amazing display of colors and children’s artwork. It reminded me of the sort of thing you’d see at the entrance of a children’s museum. But there was a certain amount of dread and sadness that filled the air. You’d see families, silently strolling with downcast faces. Children in wheel chairs, others walking but with no hair and a pained expression. Sometimes uncontrollable weeping was heard, but not as often as I expected. Places like this shouldn’t have to exist.
Other times, my wife and I would escape to a nearby sandwich shop and just talk. We’d talk about the what ifs. What if he doesn’t get better? What will we do if he dies? What will I say to our kids? What if my heart never recovers? What if?
The waiting was the hardest part. Waiting to see him again. Waiting to touch him and sing him another song. Waiting to hear if the new treatment was working. Waiting to hear if they had decided on a blood transfusion. Wait, wait, wait. There was nothing we could do, but wait. So we did.
Days turned into a weeks. Weeks of life on hold. Weeks of little sleep and lots of coffee. Weeks of tears and of friends simply loving us, by being there and sharing the time as we waited.
There was nothing we could do, but wait. So we did.