Last and most of today I have felt a sense of dread. Not the kind of dread when you really don’t want to do something, but one of an actual evil being is about . I feel something like a Harry Potter Dementor https://en.wikipedia.org/wiki/Magical_creatures_in_Harry_Potter#Dementors lurking near me. Lurking near my family. It is the thing that makes the other shoe drop or breaks the last straw or dear I say makes the situation we are currently in spiral out of control.
Today was to be Nicks first breathing trial day. The team would turn off his sedation completely and then turn off the ventilator to see where he was as far as his ability to breathe. Nick had an X-ray this morning and it showed he still had fluid on his right lobe of his lung so no breathing trial, but they did do a “sedation vacation” for 90 minutes. Perry was his coach today because I just couldn’t watch the fear in his face and his tears. I didn’t just bail on Perry, we had a long conversation and this is where he does better because he is less emotional than I. He is wired differently so he stood near Nick for 90 minutes helping his remain calm.
Nick decided to try to pull his breathing tubes out, but the nurse got him before he was successful. This is one of those cases where it was terrifying and actually a positive step forward. It showed a different part of his brain was active. The doctors came in to check his awareness and did some neural tests but his body started shivering uncontrollably like a seizure. It was from his temperature rising because of the infection in his lung. Poor Nick is still sleeping literally on ice to keep his fevers down. It is awful to see your child shiver from the cold, but with full knowledge that they are doing it to keep his brain safe by not allowing it to get to hot.
This is where the Dementors show up. This is when they sit on the couch near us and wait. They see he has already so much medication in his body that they can’t give him more. They see that he spikes his fever super high in the afternoon so he is uncomfortable the rest of the evening. At one point I didn’t believe the cooling machine so I made the nurse take his temperature every where else to compare but it was close to what the machine said. I remembered all the ice baths I had given Nick before when he was very little. He always had high fevers and I always had to overlap medications to get keep his body from running out of control. Here we are today doing the same thing.
Right smack dab in the middle of this fever nonsense the neurologists showed up. The same one who was very matter of fact about Nick’s condition and the one who wouldn’t give me any “false hope.” She came in and started to do some tests and Nick responded. He responded in a big way and she looked at me and smiled. I am wringing my hands because of his fever and she is smiling when she says, ‘the other part of his brain is waking up” she said this is good news.
Wow. We are in a forest with Dementors all about and I am trying to guide my son through it all. In that moment I was handed a very small lantern which illuminates a tiny sliver of light just enough to see my feet stepping one in front of the other. We are still moving forward within the darkness and Nick is leading the way. As I type the nurse just put bags of ice under his armpits as he lays on a bed of ice. This is just what the Dementors want. They want me to start giving up but I can’t. I hope my love burns through all this ice to create a river that Nick lazily and happily floats into being well.