I apologize for the limited updates, 2019 has hit hard. The year began with December’s admission results, it turns out McKenzie has pancreatic insufficiency which has caused a need for multiple other tests. After learning this, we got with Palliative care and sat down for a family meeting with McKenzie’s top involved doctors. We talked, disagreed and slightly argued back and forth about lack of answers, limited vein access, continued illnesses, inability to keep McKenzie from being admitted, and no insight on future treatments or the road to stability. Unfortunately, the meeting did nothing. McKenzie has continued needing IV’s and Is currently preparing or her twelfth admission as she is now possibly having seizures.
To be honest, even the craziest part of our hectic life has become routine – life has caused an almost numbness to the days. I was once so eager to fight, to create awareness and to “fix” anything within reach – but as time has passed and while I will always fight, I have lost the eagerness to share. I suppose I thought by sharing, I could allow those around us an insight on our lives and provide a reason to our behaviors. but the truth is, nobody will ever grasp the reality of our very different life.
I am hopeful that McKenzie’s next admission will finally provide us with the answers we need to give her stability, to give us all stability. I am amazed by her never-fading strength as she undergoes the continued pokes and tests, but I am weary of how much more she can take before it takes a toll on the rest of her life, as we have already started to notice. The next week will be full of preparation as I refuse to allow another answer-less admission.