"Rejoice in the Lord always. I shall say it again: rejoice! Your kindness should be known to all. The Lord is near. Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus." Phillippians 4:4-7
Last night I felt peaceful. It was a familiarly strange peace. Months ago, when we had just gotten a diagnosis, I asked for your prayers and I found peace. Then, as the early months progressed, at times very frightening, I asked for prayers and I found peace. For the past two weeks, I have been wanting that. I have been scared. I was having trouble sleeping and sometimes trouble eating. Last night I asked for prayers, and I found peace. Peace that "surpasses all understanding." Sarah was scheduled for a third extubation attempt this afternoon, and I was at peace. Prayer works.
I kissed my baby goodnight and I went to sleep comfortably.
I was awakened at two in the morning by a strange but familiar sound. I could not identify it through my sleepy daze. A gurgling sort of sound. The sound inspired very strong and positive emotions before I figured out what it was. I opened my sleepy eyes to see a very nervous nurse standing over my baby. And it dawned on me: those noises were crying! Sarah was crying and I could hear it! You cannot hear a baby's cry when they are intubated. Something was wrong. The reason it inspired positive emotions was because the first time I heard the sound was when she was just a few months old and she had just been successfully extubated. That sound then meant she did not need a tracheotomy. That sound was Sarah's voice. This time, the sound only meant one thing: Sarah's breathing tube was out.
The nurse called for help, and soon the room was filled with very concerned doctors and nurses and respiratory techs. Sarah was crying. They checked a number of things (was it possible that she was just able to get sound around the tube?) but quickly determined that the tube was out. It did not look like it was out, but it was. Sarah had managed to get the tube out on her own. They quickly got the tube all the way out. Some quickly prepared to re-intubate. Some quickly set up the high-flow nasal cannula. She was not happy, but she was not in obvious distress either. They were prepared to re-intubate in a big hurry, but they decided to give her a chance to breathe. And, amazingly, she did! She was angry. She was in pain. They could not give her sedation medications to calm her down or blunt the pain, because it might depress her respiratory drive. But she was breathing on her own. The nervous crowd disappeared. After half an hour, they ordered a chest x-ray and a blood gas to make sure everything was as positive as it seemed. Both were encouraging. I got to hold my baby. I held her in my lap for hours. She calmed down and slept peacefully in my arms. It was wonderful. Amazing. Peaceful.
As you can imagine, we had a lot of visitors in the next few hours. Her nurse came in often to check everything and make sure Sarah was getting better not worse. The doctors came in, one after another, to check on her. She looked and sounded better every minute. She was working hard that first hour, but her work was successful, and slowly, slowly, she was able to calm down. By the time we would have been waking up on a normal morning at the hospital (5:30 or 6) her breathing looked normal. It was supported, of course, by high flow oxygen through a cannula, but she was not exhausting herself with labored breathing. She was just breathing.
We cannot predict the actions of God or our children. In retrospect, it is much better that she did not have to go across the hospital to the OR to be extubated by strangers with Mom no where in sight. In retrospect, it was wonderful to skip the hours of suspense and skip right to the breathing. The best laid plans are sometimes best ignored.
That said, Sarah has been given strict instructions never to do that again.