Jude's cardiologist nurse called this morning. They said they tracked 5 sinus tachycardia episodes this past weekend. There is still nothing showing it's anymore than a very fast heart rate. I explained to her what happened last night and she was SO nice. She said she would be beyond frustrated and at this point she thinks I should involve patient advocacy. She said if this was her son she would have gotten angry awhile ago. I told her I understand there is nothing wrong structurally with Jude's heart, but I worry about damage occurring due to the frequent attacks. She completely agreed.
So I put a call into the advocacy office. I don't want anyone to feel I "tattled" on them, but I also want whats best for Jude. If this is truly a therapeutic dose issue then what level are we trying to obtain? When do we say we surpassed the dosage and we now move on to explore other issues?
So we will see what happens. I called advocacy about an hour ago and at first she seemed very short. She then asked me to explain what happened and once I told her the whole story she got very very nice. She said she was going to meet with all the doctors and decide a plan of action. Then she will call me back.
I do believe the doctors are doing their best. I think it may be a problem with to many hands in the pot and no one has the right spoon.