Wednesday, August 1, 2012Tonight's picture was taken in August of 2008. Mattie was adjusting to life in the hospital that first week, and with that, we discovered he liked painting on large sheets of paper. This was Linda's (Mattie's Child Life Specialist) idea, and she set up a painting station right in the hallway of the PICU for Mattie. Anything to get out of the room was a blessing, because when we first entered the hospital there was NO child life playroom. That room was a very needed addition to the pediatric floor, and it did help to motivate Mattie to get out of his hospital room, even on very bad days. In the midst of Mattie's fear about being in the hospital and getting poked and prodded, I find it fascinating that he would choose to paint a sun and the earth. The sun was bold and happy looking. Which even with cancer, these were Mattie characteristics that always shone through. The stress we all lived with was beyond overwhelming and intense, which is why Linda will never be forgotten. I could tell she appreciated Mattie early on, was able to engage, understand, and advocate beautifully for him. So from my perspective if Mattie had moments of happiness in the hospital it was because he had friends like Linda there who made a difference in our whole family's life.
Quote of the day: Recall as often as you wish; a happy memory never
wears out. ~ Libbie Fudim
Today I had two appointments with doctors and landed up visiting Virginia Hospital Center and Georgetown University Hospital. At the cardiologist's office, I had a stress test and two echocardiograms. The echocardiogram uses sound waves to take pictures of the heart before and after exercise. I have never done a stress test before, but the test does live up to its name. I am not sure the exercise portion of the test bothered me as much as the people performing the test. Apparently I was the lucky one today because in the stress test room, I had four people with me. Two were techs and two were nurses. Typically there would only be one tech and one nurse performing such a test, but there was training going on, and I was the guinea pig. Needless to say their banter with each other was driving me CRAZY! Mind you to have this test performed, you basically have to take everything off from the waist up and wear a skimpy covering. As they were figuring out how to put the electrodes on my chest, I literally wanted to throttle the two males in the room. Finally, as they were figuring this all out, I literally decided to ask them a group question. I asked each of them to raise their hand if they personally experienced a stress test. Guess what?! Not one of them in the room ever had a stress test, a test in which they unfortunately put hundreds of people through a week! I told them I was shocked and that in my profession, no mental health practitioner could ethically administer a test/assessment without first taking it themselves. They looked shocked and embarrassed, because here they are, talking a mile a minute, being insensitive and they have NO idea what level of patient anxiety is sitting before them on the table. Having to take this test is indeed anxiety provoking because you just aren't sure what they are going to find, and in addition, the test itself taxes your heart for 10 to 12 minutes quite intensely.
The male nurse and I were not on the same wavelength. He was the trainer of the other nurse and when I asked if anyone ever had a stress test, his actual response was..... "I go on the treadmill all the time at the gym!" As if these two things are equivalent!!! Are you kidding me?! That truly was his response, which in my book was an even more insensitive response than........... NO I have never taken a stress test before! I continue to be perplexed by the medical profession, and what today tells me is so many of them are checked out, going through the motions, and are insensitive to patients because they have not experienced some of the things they are performing on their patients. If they did, the behavior would be VERY different! Case in point, I recall last week when taking a CT scan, the tech was incredibly empathetic. She was because years ago she too had a chest CT with contrast, and the contrast scared her so much, that she remembers it vividly today (CT contrast can make you feel like you are on fire, with the sensation that you are going to the bathroom on yourself, and in the chest region you feel paralyzed almost for a minute!). Which is why her personal insights help guide how she interacts with and treats her patients.
The actual stress test involves a treadmill. While on the treadmill you are hooked up to about 20 electrodes. Throughout the test, they are constantly raising the inclination of the treadmill and the speed at which you are walking. By the time they are finished with you, you feel like you are briskly walking up a very sharp incline. So much so, that if I let go of the handle bars, I would have gone flying! I did not like the inclination at all, and when I complained about it, the male nurse let me know that an 80+ year old woman completed the test this morning without complaining. Again, really?! If he thinks I am stupid enough to think that he put this 80+ year old through the same paces he did with me, than I don't know what to say. Nonetheless, his comment was nasty, and I let his supervisor know it. This is not the time to be snappy and nasty to patients when they are trying their best to complete a test.
The highlight of my day however, was going to Georgetown University Hospital and meeting with the VP of Patient Advocacy. Julie is an amazing professional who helped Peter and I on numerous occasions at the Hospital. Today's meeting was to get Julie's help with an initiative I am working on with the parent advisory board at the Hospital. Mattie is no longer in treatment and I could easily walk away from the whole cancer thing, but I try to use the experiences we had at the Hospital to help shape the experience for future families, so that perhaps 1/10th of what they are going through will be a bit smoother or less stressful.
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