Written August 21, 2010 9:00 pm
Saturday was a good day. Anita again slept peacefully through the night. Sedation was lowered during the morning, and she met with the Neurologist and his team, as well as with many family members. She was alert and in good spirits, lots of "thumbs up"!!! A preliminary weaning off the ventilator was attempted for a period of time. However, she tired and the ventilator intervention was returned. An MRI of the brain and spinal cortex was performed in the afternoon. Preliminary review revealed no further lesion development or enhancement in the spinal cortex, which is good news. Sedation was increased for the MRI and she will remain on the higher level of sedation thru the night. Anita and her family thank you and are humbled by the outpouring of support.
I remember the 17 mile bike ride on the Virginia Creeper Trail. The weather was warm and clear. The bike path was beautiful as it wound down the mountain. I recollect thinking about how the boys, who were at the Philmont Scout Ranch in New Mexico, would enjoy this. Maybe we could do a family trip in the fall and enjoy the foliage on the trail. The sound of the gravel crunching under my tires, the water in the stream flowing beside me, and the sunlight cutting through the trees made for a perfect ride. What a feeling of freedom! To finish the trail, return the rented bike and then on to sip port at the Martha Washington Inn. That's living large in my book!
Just a few days later, I wound up sipping a coke while sitting in a recliner in a hospital. Things get fuzzy for me after the first hospital, but to "wake up" in another hospital, attached to a ventilator, with movement only in my right hand is frightening to say the least. I couldn't talk. I couldn't ask questions. I could here perfectly fine, but all I was hearing was "you will be ok", "we're going to run this test", "we're going to reposition you, "we're going to suction you." We was the operative word. In a teaching hospital there is no "I", only "we". We was easier for me than "you". "Can you move your feet?" "Can you move your fingers?" "Can you breathe on your own?" I could only try and shake my head no.
How was I supposed to understand this, when no one in the circus of white coats and scrubs could take out the megaphone and hawk out, "welcome to Neuro ICU. Step right up and witness a medical mystery. See the lady crash in the MRI. Watch her friends and family try to lip read her requests. Watch her watching us watching her. Just one more test. One more procedure. I am sure we will figure it out!"
Thank God for my husband John. He was my constant. My touchstone. I watched the clock every morning awaiting his arrival. His smiling face couldn't mask the concern I saw in his eyes. "You're going to be fine," was more of a command than a statement that he made several times a day. I was scared. I needed him. I wanted him to crawl into bed with me, unhook the ventilator, and hold me back to the way it used to be. But I could just look at him and listen. And nod my head.
Nights were the scariest. The sound from the ventilator was louder at night. A constant reminder of its hold on me. It was hard to sleep. Sleep brought vivid, frightening dreams. It was dark. I was alone. I would visualize myself being cradled in angel's wings. Huge white feathers cocooning around me. This brought me comfort to help me through another night. To hold me until the morning light. I would close my eyes and visualize walking the dog, riding my bike, sitting on the beach with John and the boys. I would imagine climbing a hill, feeling my muscles working, feeling the physical drain of pushing myself to fatigue. These images and the angel wings protected me from my dark reality as I found my way to a place where sleep was an escape. A comfort.
Happy Birthday John!
Friday, December 27, 2013
Saturday, December 21, 2013
Written August 20, 2010 9:00pm
Anita slept peacefully through Thursday night while sedated. It is planned to get her back on a more normal sleep pattern, i.e. sleep at night, more awake during the day over time. Anita had her first round of Occupational Therapy (OT)/ Physical Therapy (PT) this morning. She sat up on the edge of the bed, and gave a “thumbs up” to all present. I guess she approves of the PT and the OT in particular!!! Later in the morning, another lumbar puncture (spinal tap) was performed to obtain fluid for various tests. She had the last dosage of the steroid program on Friday afternoon. Results of a serum test for the presence of Neuro Myelitis Optica (NMO) antibodies came back negative. Accordingly, her exact diagnosis remains unknown, however still points to MS or a disease akin to an aggressive version of MS.
I remember signing the will. My friend had to help me lift my right hand. It’s ironic we had just had the papers drawn up a few weeks before my hospitalization. We finally initiated the will because we didn’t have to choose a guardian for our children. They were of age now so the process was simpler. If trust funds and end of life decisions can be regarded as easy, the time was ripe. Little did we know I would be knocking on that door just a short time after the paper work was completed. The lawyer came to the hospital to witness my signature. There were balloons tied to the bed, lending a rather festive atmosphere to the occasion. That’s the last thing I recall from that particular room. The sun shining through the window, the room so bright that no overhead lights were needed. Signing those papers. Not thinking that it might be my last good effort at independence.
I don’t remember the frantic ambulance ride to the local, large teaching hospital. I don’t remember being intubated. “There’s been a lot of bleeding due to the steroids.” “She will need a transfusion.” “We’re going to put her in twilight sleep.” Were they talking about me!? I remember my cousin hanging a Happy Birthday banner on the wall, telling me, “Everything will be ok, just have faith.” I remember lots of white lab jackets, an entourage around my bed. I couldn’t think straight. Thoughts rolled in and out my head like minnows through a fishing net. I couldn’t hold onto a thought long enough to process it. I couldn’t stay awake. I had to trust whoever was holding the net. I needed someone else to be in charge.
The dreams I had were so vivid. I know they were just dreams but they have stayed with me as if they just visited last night. I was in a hammock in a covered outdoor picnic shelter. There was a granddaddy long leg spider the size of a minivan bouncing a ball beside me. She (I know it was a she because of her eyelashes and voice) was telling me “they” want to put you in twilight sleep. I felt a primal fear while swinging in that hammock. Not of the spider, but of my situation. I wanted “them” to leave me alone. I tried to scream, “Noooooo!” but I couldn’t. The spider assured me, “all will be ok. Don’t fight.” But I did fight and I’ve been fighting ever since.
Anita slept peacefully through Thursday night while sedated. It is planned to get her back on a more normal sleep pattern, i.e. sleep at night, more awake during the day over time. Anita had her first round of Occupational Therapy (OT)/ Physical Therapy (PT) this morning. She sat up on the edge of the bed, and gave a “thumbs up” to all present. I guess she approves of the PT and the OT in particular!!! Later in the morning, another lumbar puncture (spinal tap) was performed to obtain fluid for various tests. She had the last dosage of the steroid program on Friday afternoon. Results of a serum test for the presence of Neuro Myelitis Optica (NMO) antibodies came back negative. Accordingly, her exact diagnosis remains unknown, however still points to MS or a disease akin to an aggressive version of MS.
I remember signing the will. My friend had to help me lift my right hand. It’s ironic we had just had the papers drawn up a few weeks before my hospitalization. We finally initiated the will because we didn’t have to choose a guardian for our children. They were of age now so the process was simpler. If trust funds and end of life decisions can be regarded as easy, the time was ripe. Little did we know I would be knocking on that door just a short time after the paper work was completed. The lawyer came to the hospital to witness my signature. There were balloons tied to the bed, lending a rather festive atmosphere to the occasion. That’s the last thing I recall from that particular room. The sun shining through the window, the room so bright that no overhead lights were needed. Signing those papers. Not thinking that it might be my last good effort at independence.
I don’t remember the frantic ambulance ride to the local, large teaching hospital. I don’t remember being intubated. “There’s been a lot of bleeding due to the steroids.” “She will need a transfusion.” “We’re going to put her in twilight sleep.” Were they talking about me!? I remember my cousin hanging a Happy Birthday banner on the wall, telling me, “Everything will be ok, just have faith.” I remember lots of white lab jackets, an entourage around my bed. I couldn’t think straight. Thoughts rolled in and out my head like minnows through a fishing net. I couldn’t hold onto a thought long enough to process it. I couldn’t stay awake. I had to trust whoever was holding the net. I needed someone else to be in charge.
The dreams I had were so vivid. I know they were just dreams but they have stayed with me as if they just visited last night. I was in a hammock in a covered outdoor picnic shelter. There was a granddaddy long leg spider the size of a minivan bouncing a ball beside me. She (I know it was a she because of her eyelashes and voice) was telling me “they” want to put you in twilight sleep. I felt a primal fear while swinging in that hammock. Not of the spider, but of my situation. I wanted “them” to leave me alone. I tried to scream, “Noooooo!” but I couldn’t. The spider assured me, “all will be ok. Don’t fight.” But I did fight and I’ve been fighting ever since.
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