July 19, 2022
The night terrors are back this past week. I am sure the calendar is the trigger. I had one last night. On July 17, 2017, at 9:00 pm, Hayley was settled into the Cherry Hill ICU. It had been one of the worse days of my life. We felt better, even though the neurologist did not meet us there to discuss her treatment plan as she promised. We took this to mean it was not an emergency. We knew what was causing her excruciating pain, a blood clot at the base of her brain. They were planning to start the blood thinner, Heparin, at 10:00 pm to break up the clot. The ICU doctor did not tell us anything about her condition. We didn’t know the location of the clot. We didn’t know the treatment plan. We didn’t know that it was a one in a million type of clot. We thought she was finally diagnosis and let’s fix it. She was comfortable and out of pain. Only one of us could stay in the small room. We decided it would be Scott. My plan was to head home to check on Henry. I would sleep a few hours and come back maybe between 2:00 and 4:00. I had no intention of missing rounds. It was time to get answers and see how long it would take for them to fix her. This will always be the most traumatic and tragic decision I have made as a parent.
The episodes at first were very specific. PTSD is like that. It is not one symptom that is the same thing at the same time. People with PTSD have intense, disturbing thoughts and feelings related to their experience that last long after the traumatic event has ended. They may relive the event through flashbacks or nightmares; they may feel sadness, fear or anger; and they may feel detached or estranged from other people.
According to behavioral health experts one of the five symptoms of PTSD is: Internal reminders of a traumatic event. These signs of trauma typically present as nightmares or flashbacks. It’s important to realize that these are not simply memories. They are unwanted, intrusive episodes in which a person feels as though they are in the life threatening situation again – like they’re watching a movie or seeing it unfold in front of them. It feels very real to them.
I have nightmares that are so realistic and so detailed about things that had actually happened. It takes hours, even days to shake it. You wake up and you are stuck between the memory and current reality. The most terrifying dreams are when my mind takes me to after July 11th but before July 18th. In the dream I know the answer. I just need to get them to treat the issue before it is too late. According to the experts she could have been saved every single fucking day, all the way to about two hours before she crashed. I ask myself every single day what I could have done to prevent her death.
The dreams are terrifying. The general theme is trying to get help, trying to make the one person listen. I am running out of time. The terror is real. My mind and body truly do not believe I am in a bed in present day. It is like a runaway train, picking up speed. It never ends until I wake up screaming.
Sometimes the dreams make little sense. The one common thread is that they are very detailed and complicated. Sort of like a Tim Burton movie. There are real people in these “movies”. The genre is always the same. I am trying to find something or someone. I am always trying to convince someone or even Hayley herself that she is not dead.
Scott and I have slept in different rooms more and more as the years have passed. Not because I don’t want to share the bed with him. Sometimes it would be one of us snoring. Sometimes it would be moving too much. He has restless leg syndrome. He sleeps pretty soundly. I wake easily. Good sleep has eluded me for years. It has become more important since losing Hayley. I have spent so much daylight sleeping. Sleeping is an escape. I have worked hard and tried everything to make sure I can get as much of that depressed sleep during the appropriate hours. It is a battle I continue to lose. I also do not want him to be present for the night terrors. A year ago I took a trip to Mexico and had two different friends room with me. Both witnessed different versions of my night terrors. Both were very concerned. Sharing a hotel room is no longer an option.
Scott believes that if he does not acknowledge something, it does not exist. His ability to compartmentalize is a skill I envy. He has never confirmed that I wake up screaming. I just know that I do. My mouth and throat is dry, my heart is beating so loud, and many times I am soaked in sweat. Henry has heard the screaming. Everyone on the hospital floor heard it on June 18, 2017. I will never know if Hayley heard me.
On July 11th after the meeting with the anesthesiologist, I waited with Hayley. The surgical nurse came to get her. We hugged and kissed her. I assured her we would not leave that family waiting room. She reminded me that I needed to hit the prime day sale on Amazon to get what she needed for her new apartment in the fall. The nurse indicated how long the surgery would take. Packages from Amazon and home goods from Macys were waiting on the porch or in the house when I came home without her. I actually returned most of the items in a daze. “Why are you returning these?” “My daughter died two weeks ago and she won’t need them for her apartment” I was numb.
We settled in to wait. The amount of time we had been told came and went. A nurse came out to tell us that the surgery was running long. She assured us everything was going well. She turned to leave. Nope. “Excuse me, why is the surgery going long?”. Her response “The procedure got started late”. I groaned to Scott. I hoped that they gave her some anxiety meds while she had to wait. Her nerves must have been off the charts. I had no idea.
Within about 15 minutes of that update, the surgery coordinator came in to see us. She was the one that scheduled the surgery and the appointments. She was the one that dealt with the insurance. She had been a great support system for Hayley and I during the short amount of time we had been working with her. She felt very protective over Hayley. She indicated that she knew someone had told us the surgery was running long. She also suggested that they had not told us exactly why. She wanted us to know that it started late because there had been issues with the epidural. WTF? Evidently the epidural was difficult to place and that she did faint. That was why it was two hours late? Did that mean he worked on the epidural for two fucking hours? That must have been torture for Hayley. I was livid. What that meant to me was he did not listen to a word I said. Or he did listen and then ignored our very specific requests. I was not angry because I thought there would be complications. It did not occur to me that there would be a problem because the surgery went forward. But I was not a happy mama bear. As it turned out this delay and this arrogant man would end up costing Hayley her life.
