I received a call today from Zachary's doctor. She has informed me that she did indeed get in touch with John's Hopkins about doing the angiogram there and discovered that the cost is $18,000 more there than it is here. She also got in touch with St. Jude and they told her that generally they do not do diagnostic work. She also wanted to know if I'd be interested in talking to a ?patient advocate? She kind of explained, but, do I need a patient advocate? Are we going to be spending that much time in the hospital?
Zachary has been complaining of an upset stomach, light headache and leg pain. I’m thinking he played pretty hard at Cub Scouts and he may have caught a little bug or something from school. I gave him 1/2 a benadryl and put his TENS unit on, with ice. He just told me that he has been using the ice packs every night since Monday to help ease the pain during the night.
I am going to track Zachary very closely to see how he does without Physical Therapy. His physical Therapist, his neurologist and myself feel that at this time there isn’t much change in Zachary’s mobility and want to see if there is any change without the PT ... “trial run”, Z and I will go in once a week to see how he is doing as far as measurements go.
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