At 2pm Dana and I were stuck in traffic on our way to HUP. Dan had called 3 minutes earlier to let us know that they were beginning set up for my mom’s tracheotomy. As we stared at the traffic piled as far as the eye could see we both kept asking, “Since when do they do procedures on time?!”
After finding my mom extremely alert and responsive during his last visit, Dr Schuster felt a trach tube would be more comfortable for my mom compared to the ET tube she has been enduring. The idea of the trach tube did not sit well with me because I know there is quite a bit of pain for a couple days following the procedure but because it will be more comfortable in the long term it was agreed upon and Dan signed the consent form. A trach tube is not a pretty thing, but it removes the tube from my mom’s throat and the tape that is wound tightly about her face to hold it in place will be a thing of the past.
So far, each day of my mom’s illness has left us worse off than the previous and we are praying that after the cells are given back to her each day will leave us better than that before. With each medical choice that must be made, a new degree of separation is established. I cannot be of any help to Dan and my sisters if I let my emotions guide my decisions, I always need to pull back and research the next step, cold and practical. It is a painful place to be alone and I worry about what I will lose in my future if I can’t turn off that separation. Every choice made for my mom is based on the future, the belief that she will return to us from this hell she is going through. Despite the warnings people give us about false hope we continue to believe because one man gives us that luxury. Dr Schuster feels this disease can be stopped and that physical therapy will give back what my mom has lost. He has warned us that she will never be “normal” but that isn’t a popular adjective in our family anyway. She will still be the woman we love and respect, the woman who has been responsible for most of our greatest memories without even trying.
A couple hours in the ICU waiting room had Dana and I anxious and annoyed by the time we were told my mom was resting comfortably and we could see her. The sight before me had me wishing that I had accomplished one more degree of separation before I entered the room. The ET tube was gone but left behind a small cut where it had dug into my mom’s cheek. I tried to keep my eyes on her face, calm and lovely, but they inevitably strayed to the horror that is a trach tube. A small white tube pokes from an incision in her throat and attaches to the ventilator tubing until my mom comes out of sedation and begins breathing on her own once again. For the moment bright red blood oozes at the base of the tube where it will dry, dark and crusted. Each time my mom coughs or expels breath with any force it sends bloody mucus spraying from the tube. As I said, it’s not pretty, but the next day I would hear the sound of my mom’s own breath rushing through that tube and would find it quite beautiful.
After finding my mom extremely alert and responsive during his last visit, Dr Schuster felt a trach tube would be more comfortable for my mom compared to the ET tube she has been enduring. The idea of the trach tube did not sit well with me because I know there is quite a bit of pain for a couple days following the procedure but because it will be more comfortable in the long term it was agreed upon and Dan signed the consent form. A trach tube is not a pretty thing, but it removes the tube from my mom’s throat and the tape that is wound tightly about her face to hold it in place will be a thing of the past.
So far, each day of my mom’s illness has left us worse off than the previous and we are praying that after the cells are given back to her each day will leave us better than that before. With each medical choice that must be made, a new degree of separation is established. I cannot be of any help to Dan and my sisters if I let my emotions guide my decisions, I always need to pull back and research the next step, cold and practical. It is a painful place to be alone and I worry about what I will lose in my future if I can’t turn off that separation. Every choice made for my mom is based on the future, the belief that she will return to us from this hell she is going through. Despite the warnings people give us about false hope we continue to believe because one man gives us that luxury. Dr Schuster feels this disease can be stopped and that physical therapy will give back what my mom has lost. He has warned us that she will never be “normal” but that isn’t a popular adjective in our family anyway. She will still be the woman we love and respect, the woman who has been responsible for most of our greatest memories without even trying.
A couple hours in the ICU waiting room had Dana and I anxious and annoyed by the time we were told my mom was resting comfortably and we could see her. The sight before me had me wishing that I had accomplished one more degree of separation before I entered the room. The ET tube was gone but left behind a small cut where it had dug into my mom’s cheek. I tried to keep my eyes on her face, calm and lovely, but they inevitably strayed to the horror that is a trach tube. A small white tube pokes from an incision in her throat and attaches to the ventilator tubing until my mom comes out of sedation and begins breathing on her own once again. For the moment bright red blood oozes at the base of the tube where it will dry, dark and crusted. Each time my mom coughs or expels breath with any force it sends bloody mucus spraying from the tube. As I said, it’s not pretty, but the next day I would hear the sound of my mom’s own breath rushing through that tube and would find it quite beautiful.
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