I just wanted to give everybody an update on how things are going. Recently, Theo has become much more agitated. He usually is very calm and content during morning and daytime periods and begins to show more agitation toward evening. That has been his usual pattern of behavior for some time. His agitation decreased quite a bit when we started the methadone as a regularly scheduled med three times a day. We would usually have to give a dose of morphine and ativan in the evenings to help him calm down. Beginning this past weekend, he woke up early Saturday morning and immediately began showing signs of agitation. He couldn't fall back to sleep for several hours even with multiple doses. He stayed in a fairly agitated state most of the day unless he was sleeping--and even that took several doses of morphine and ativan. Once we had to give him his choloral hydrate during the daytime just so he could get some relief. He did this Saturday, Sunday and Monday. On Tuesday, we talked to our nurses and doctors and upped his dose of methadone to 1.5 ml 4 times day and increased the dosage of the morphine a half milliter as needed. This seemed to help some yesterday afternoon, but he was fairly agitated this morning. Our nurse practitioner with the hem-onc group told us it will take about 24 hours to get the full effect from increasing the methadone dosage. People with brain tumors frequently have cerebral edema--swelling of the covering of the brain--which can cause increased agitation. So he is also now taking a steroid to counteract this swelling--decadron--4 times a day. I really hope this helps.
There are a lot of other options that we can look at to help him with control of agitation and pain if this doesn't seem to do the trick. I hope it will though. The difficulty of this already barely tolerable situation is multiplied a hundred fold when we have to watch him cry and squirm and be in a state of agitation/pain--whatever it is--and be unable to offer him any comfort. We feel even more helpless and heartbroken. We want him to be as comfortable and peaceful as possible throughout this process.
They say that he doesn't feel or percieve pain like we can, but they can't really know what he feels or experiences. When he cries and arches his back and moves his arms in jerky motions over and over and breathes in that stridorous way, there is for certain something wrong and it doesn't feel good to him, so, we hope this will help right away.
I want to share another story with you. Not everyone knows about our experience with the dragonflies so I wanted to write about that. This whole saga began on a Saturday morning in August (if you want to read about it in detail, go to the archive section and click on August and scroll all the way down to the first entry). We were with him at the hospital all that day and evening, finally leaving around midnight to go home to sleep some. We live only a few miles from the hospital so, we felt ok about going home for a few hours. We got up very early Sunday morning to return to his bedside. The sun was shining and everything was kind of still like it is in the early morning. People were still at home, having breakfast, getting ready for church, sleeping late, doing Sunday morning things, and we had the streets to ourselves. We stopped at a light on Leigh Street and a dragonfly flew over to the car and hovered at the windshield. I said, "Look at that!", as the dragonfly bounced up and down. He seemed to be looking in at us. The light changed and we drove on as he flew up and away. At the next light, he flew over to the windshield a second time. It seemed as if he was following us.
Later that day in Theo's room on the 7th floor, I was gazing out the window, which I did a lot when I couldn't stand to look at my baby lying in the big hospital bed, hooked up to lines and machines, in pain and suffering. As I looked out at the city and the sky, a large dragonfly flew up to the window and hovered there. He began to bounce up and down and once, he bounced right off the big glass window before zipping off. I was astounded. That window was pretty high up. I thought then that the dragonflies must mean something. Jamie teases me about how I think everything means something, but I knew that this wasn't some random flight of insects. The thought of Jamie's mother, who had passed away as Theo was being born, came into my mind and I wondered what that meant.
I started seeing dragonflies everywhere. They followed us each morning as we drove to the hospital for about a week, bouncing and flitting against the glass when we came to stops. After about a week of steady stop light appearances, they tapered off and only appeared a few more times on drives to the hospital. But it seemed dragonflies were showing up all over the place; our nurse wore a scrub top with dragonflies on it, my mother showed up at the hospital wearing a dragonfly t-shirt, a friend came to visit Theo with rhinestone dragonflies on her sandals. There was a pretty, colorful dragonfly tabletop nightlight on sale at the gift shop. I purchased it to light up Theo's room at night. I put it on the wide ledge of his window and we were able to see the colored lights from the street and blow him a kiss from the sidewalk.
After I returned to work, following his first week in the hospital, I was out with my friend on our lunch break when we decided to stop into a clothing store briefly before returning to work. As I pulled into a parking spot, a huge dragonfly, the biggest I've ever seen, flew over to the windshield. Pointing, I said, "Look!" He hovered there for several seconds as I relayed to her all the previous dragonfly sightings. We were in the store maybe half an hour. When we returned to the car, the dragonfly was still there flitting around the car. I stopped near the car door and he hovered in front of me, slightly above my head. He was only about 2 feet away. I felt that I could reach out my hand and he would land there. But I stood very still looking at him. I could see the light bounce off his silvery wings as they fluttered. His body was huge and shimmered blue and green, the color of peacock feathers. His big round multi-sectioned eyes were orange and shiny and I thought I could see the many reflections of myself repeated there. He appeared to be looking right at me. I said, "Hello." and he just continued to hover, as if he were waiting for something. I told him, "I'll be going the hospital this afternoon" and at that, he flew upward, bounced in the air a few times and then bounced over to Jessica and back toward me as if to say, "Who is this?". So, I said, "That's Jessica. She's my friend". Then he flew away.
A few days later I did some research on the internet and found that dragonflies have rich symbolism in many different cultures. In some Native American mythologies they represent the spirits of the dead and also stand for transformation and metamorphosis. Their presence can signify renewal and rebirth as well as instability and change. In Zuni myths they are shamanistic creatures with supernatural powers who bring messages from the gods, traveling freely between the physical and spirit worlds. Japanese samuri frequently wore representations of dragonflies on their helmets to symbolize swiftness and strength. I still don't know exactly what the appearances of the dragonflies means, but I know that it felt magical to me and gave me a sense that we were being watched over, guarded and protected. I also felt a sense of wonder and peace when they appeared.
In some ways, to me, Theo is the dragonfly. I will never see another dragonfly, in nature or art, or anywhere else, without thinking of him. To me they represent his strength, his beauty, his delicacy and the power of his spirit. They remind me of the changes we have all gone through along with the great wonder and beauty we have experienced throughout his life. So next time you see a dragonfly, please think of Theo and send out love to him and all of us.
Love to everybody--