The scheduler asked if I would like to be transfer over to talk to a nurse about it. They called me back an hour or so later. I explained I wasn't aware that "thinking about starting pamidronate" meant "doing pamidronate". She asked me what questions I had. I explained that I need to go through this because I was told it wasn't something they were in favor of when Gary first showed calcium. I asked if it was the x-rays of his feet and ankles that pushed them to make the decision. She said the notes did say he has calcium in ankles and feet. Ok. Not much help but I already know the logic behind it. I hate it but I know it. I assume that at this point the calcium might start to interfere with his ability to walk properly. I don't want to assume that it is the calcium that is making his toes cross but it would make sense.
The doctor called me later that afternoon. I just am...................twirling and dizzy........am I not remembering conversations properly? Is this a accent thing? I do admit I struggle with foreign accents but our doc has a fun, easy to understand acccent. So nooooooo. She started by saying she understood I was having second thoughts. "the last thing you said to me was, 'lets start thinking about'." So I am figuring out we have misunderstanding in communication. I asked about the xray. She said there was influx of calcium but its not on the bone. That means this: Calcium influx in nonexcitable cells regulates such diverse processes as exocytosis, contraction, enzyme control, gene regulation, cell proliferation, and apoptosis. I would love to explain but HUH?
|This is not Gary's xray, but an example of what calcinosis can look like.|
I was in the middle of getting ready to take Gary for putt putt golf for his 4th birthday. I could sit on the bed and stare. So we are headed out for an EKG this afternoon. After doing research on Pamidronate, I feel a little better. I have read "DO NOT USE IN CHILDREN" but they do. It comes with all the standard warnings. We will have to return on Thursday to check his electrolyte levels. Apparently it can dehydrate you and can be rough on the kidneys. All the other medication he has gotten have wonderful warning as well. There have been 3 or 4 patients who had success with completely reversing calcinosis. So here goes nothing, something, ? There goes my sanity. : ( . . .. ....
And this all went down on his birthday. Thank you God for making him oblivious. Thank you for letting him be able to enjoy it. Thank You for giving us the chance to make this work. Now, lets keep him running around those bases.