Tonight's picture was taken in August of 2008. It was Mattie's first month in treatment and early on we learned that Mattie couldn't endure any scans without sedation. In fact, I blame Mattie's oncologist who did not listen to me from the beginning. I explained to him that Mattie had sensory issues and therefore I did not feel he could handle a tight confined space, that produced loud noises. The doctor thought I was an alarmist and said with verbal coaching, Mattie would be fine. Not only wasn't Mattie fine, but there was no amount of coaching that could alleviate Mattie's fears. So without sedation, getting an MRI or CT scan was close to impossible. This was when the sedation team became a part of our lives. Debbi was the nurse who headed pediatric sedation and she became a crucial part of our world. Throughout our 14 month journey, Debbi rode right along side us with every scan or procedure.
Quote of the day: If you have not been driven to the end of yourself at some point in your life, it is likely that you have not given the whole of yourself at any time in your life. ~ Craig D. Lounsbrough
It has been another long day here! My dad had an appointment with the dermatologist today. I can't tell you how many times he asked me about this appointment. Even after the appointment was over, he repeatedly asked me what the doctor said, then of course 30 minutes later forgot that he ever saw her to begin with. I wanted him to see the doctor because of his non-stop bug bites, itching, and then severe allergic reaction to the scratching. She is my doctor, but honestly I found her NO help today regarding my dad. She had no suggestions on how to manage my dad, or let's put it this way, no new ideas from what I am already doing.
All I know is I have had over a month of dealing with itching, scratching, hives, allergic reactions, and being on antibiotics, followed by steroids (because of a severe allergic reaction to the antibiotics). If managing my dad's skin condition was all I do each day, then that would be fine, but I have so much else on my plate.
Later in the day, because Peter is away in Chicago on business, I took my parents out for an early dinner. I can't tell you how many times I was up and down to the bathroom with my dad while at the restaurant. Then the last trip to the bathroom, he needed to be completely changed because he had an irritable bowel attack. I am quite certain the average person wouldn't be taking my dad out, as you never know what you are going to get with him. My parents are lucky that I have a strong stomach and constitution for dealing with bathroom issues, and am able to continue eating! My dad used to love food and the dining experience, like me, but now, he just goes through the motions. It is a sad commentary. My dad also eats super fast and then while waiting for the rest of us to catch up, he closes his eyes and sleeps at the table. If I took my life into full account, it would be very depressing, exhausting, overwhelming, and hopeless. Which is why I try not to look at the full picture. I take each moment as it comes. Meanwhile, I am headed for a walk now, as I need this time to regroup.
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