Mama Bear

I really don't like to "stir up trouble."  It's not my nature, but when my children are involved I become a Mama Bear.

 

My "Christian" is having a very difficult hospital stay right now.  He has a terrible knee bleed that is causing him to not be able to extend his leg at all….and it's been in the same position for a week.  His pain has been crazy and we finally were able to get it pretty well under control.  His pain breaks through from time to time but overall it is much better than this time last week.

I asked the doctors to consult the pain management team here at the hospital to make sure there was not anything else we needed to be doing in regards to his pain.  I mean, why wouldn't the "pain management team" not be a good resource?  Right?

The pain management team consisted of an anesthesiologist who came down for a few minutes and said we needed to take my son off all of the meds he was getting continuously through his pump and leave him with the on demand dosing he would receive from pushing the button on his pump.

Are you kidding me?  That's your recommendation?  I was so stunned that I didn't know what to say.  Then when I asked how long she would be in the hospital to see if we could call her later so that my husband (who was on his way up) and I could talk to her together she said, "my consultation is now over."

Are you kidding me?  So basically she said she was done and wasn't coming back.

I asked our hematologist to come in and he said they would not be taking her recommendation and that it was not even close. 

 I cannot let this go.  This pain management doctor obviously has not a clue about hemophilia and the pain that a person can endure.  Her demeanor was not appropriate and she made me feel as if I was an inconvenience. 

I am reaching out to the hospital patient advocate in the morning as well as the head of the hematology/oncology department.  I have to do what I can to make sure I have tried to educate so that another person is not treated this way.