On my way back to the hospital from my sisters house yesterday I was trying to grasp at anything that would ground me or fuel me since I was returning to the darkness. It was a crisp morning and still dark at 4:30 am. The sky was very clear and right above my windshield was a surreal picture of a half sliver moon and bright star. I stopped the car and looked at this wonder of nature and snapped a picture to keep inside my head to bring back when I start swirling around with the beeping machines and the sound of suction and watching Nick’s face redden with tears.
When I got to the hospital Perry and I gave each other reports and Perry left feeling very defeated. He needed to sleep and to try to get out of his own head. I wrote yesterdays blog post and pressed send when the Infectious disease doctor arrived. He said that Nick tested positive for the West Nile Virus. Yes, the dangerous virus that you can get from an infected mosquito. The West Nile virus can happen to anyone and usually the symptoms are just fever and flu like symptoms and the doctor said that many people have contracted it and didn’t even know it, but Nick was different because they are assuming that he had pneumonia or at least a very bad cold (he tested negative for the flu) and his immunity was down. This virus can affect the heart rhythm and cause fluid on the brain which may be an explanation of why his heart stopped and caused the unknown brain swelling.
When Nick woke up after I arrived he looked directly at me and recognized my face and began to cry like he has when he was a little boy. The same wrinkled brow, sad eyes, tears streaming face that I have seen before. It was remarkable and thankfully it was witnessed by my friend Jackie and his nurse Tamara. It was a striking breathtaking moment that shot an arrow through my heart because I know how scared he is and simultaneously lifted me up because it proved that Nick was still in there.
When the brain surgeon arrived we told him of this latest event and he wasn’t as convinced and told me that if there was any “real” improvement he would be able to respond to pain so he pinched Nick all over and guess what….he responded. It really surprised the surgeon. The neurologists were still on the fence but I can say Nick is responding.
A group of his friends came and played guitars in his room and when they played one of Nicks favorite songs that they all wrote together he cried. I take that as a win. Right now as I type this to you all I am in the waiting area. They told me yesterday that today will be the first time they will be trying to wean Nick off the ventilator, but to do that he has to be fully awake. This makes me want to throw up even though it is needed. When he becomes petrified with fear and I can’t help him I feel lost and he feeds off my emotion which only makes him more upset. Today it is Perry’s turn to coach him, but he is doing it with the most dramatic end game. No sedation and they will turn off the ventilator to see if Nick will breathe on his own for at least 15 minutes. I already feel nauseous and want to vomit. My prayers last night were to help Nick not be as afraid as he was when they reduced his sedation before giving him a “sedation vacation” and that today’s X-ray’s show more spaces for air to accumlate and that he kicks ass today being off the ventilator for that short time.
We need more positive steps even if they are tiny. Keep praying. I know our family is enveloped in prayer, white light, medicine buddha mantras, candle lit masses from here to India. One of my friend Ira has his guru’s family praying in India and the ashram here in Chicago have been doing medicine buddha mantras. Nick has received energy healing and blessings from different ministers there are prayer chains and prayer groups and it is working.
Thank you from my whole family. It means more than we can tell you. You are helping us remain strong and united.