Home Stretch

Macayla was a different child Thursday morning. She struggled through the night with some spastic breathing and patterns. By 6 a.m. she had a dusky complexion and blue lips. Her breathing was erratic and just didn't seem "right." Jennifer tried to go to work, but had to turn around before she even got out of Anderson.

Macayla was in fact different. Her blood pressure, heart rate, respiratory rate and temperature were all swinging wildly. Her heart rate changed a lot but stayed between 120 and 160. Her kidneys have all but stopped. Her breathing has become difficult. There has been swelling in her jaw line and tongue as she has retained fluids. Her pulse has been weak in her arms and legs as the circulation is staying concentrated in her trunk. She had a few "peaceful" spells today where she seemed in less distress. But in the evening, her breathing was sounding really bad and I repositioned her a little. She acted as if she was vomiting, but nothing came out. Because of her tongue and her jaw locked shut, I could not suction her for quite a while. She stopped breathing for almost thirty seconds. I really thought that was it. But she slowly started breathing and then went into a big grand mal seizure. I really thought that was it as she stopped breathing again. But slowly she came back.

We had to remove her feeding tube from her belly and suction because she was leaking huge amounts of fluids from her g-tube site. Sorry, that's gross, I know. But she was soaking her shirt and bed and not comfortable. We are keeping the Ativan and morphine going around the clock to make her comfortable. We have been reassured that she is probably fine from her perspective and is comatose. It's worse on us because we have to watch her shut down.

Several times today, I wondered if I were dreaming. I wondered if I would suddenly find myself startled awake in my bed and find it's just another day. But this is no dream. Often, I have heard or read poetic descriptions of death. Death may have a romantic or poetic side, but dying is hideous.

In spite of this, God has been gracious today. Love has surrounded us. We have laughed even. We have peace, and no, we cannot understand it. Peace does not make it easy or give us a whimsical attitude. It just is peace and is present in spite of the pain.