Well, last night was horrible. Ana had excruciating pain from midnight until 10:30am this morning. The pain was so bad and out of control that she couldn’t go on with it any longer and they stopped the test. The catheter had already slipped from the original placement, so how much data was collected is unknown at this time. What we do know is that surgery seems to be unavoidable... we will hear from the team next week with exactly what surgery needs to be done and when they will do it. On her return trip she will also see the mitochondrial disease specialist and the pain management team. I know that all of this seems very vague, but Ana is 16 now and we want to protect her privacy as much as possible while also keeping everyone updated.
~for peace and comfort in the coming days and weeks
~for Dr. Levitt as he makes decisions pertaining to Ana’s care
~for us and Ana’s siblings as we help support her through all of this