Owen Being Owen

My guy has yet again pulled off an amazing feat of trickery.  Owen became very sick on Tuesday.  To backtrack a bit, Owen has basically been sick since the end of August.  He has battled cold after cold, relentless seizures, respiratory distress, fevers, and irritability.  September was a long month with Owen.     On Tuesday, his overall discomfort reached a point where we felt it was necessary to give additional medication to sedate him.  By Wednesday, his 'illness' had reached such a point of respiratory distress that we were asked to contact Hospice because his doctors were concerned he had reached an end of life stage.  I was called home from my job as his work to breathe became frightening and he was having frequent apnea episodes with his nurse.

As hard as I try to not 'drink Owen's drama-filled Kool-aid', he suckered me in once again.  I have never seen him look so ill or so in distress.  I was prepared to say good-bye to my sweet little boy.  Over the course of the next three days, Owen improved slowly.  The fevers have slowly come down and the breathing has very slowly regulated back to his previous poor baseline.  Unfortunately, Owen continues to struggle with uncontrolled seizures and intense irritability.  He has almost zero positive awake-time right now.  He cries, he arches, and he is not consoled by being held.  Putting him down is impossible when he is like this.  We have drastically increased his medication to provide him with comfort (ie. sedation), because he is achieving a failing grade on our 'Quality of Life' scale.

I don't know what this means for the future with Owen.  I assume the irritability is related to the unrelenting seizures, but we do not have an effective way to stop those.  It breaks my heart to think we are now moving into an moment in time where sedation is the only way to keep him calm and peaceful.    Living a life with a mystery child- one with no diagnosis to help guide us though what to expect for him is a form of torture.  Every decision made is second-guessed because we never know what is approaching next.  I did not foresee this in Owen's near future at the end of August as we celebrated his second birthday.

We meet with a new geneticist on Thursday, Owen's previous doctor moved out of the area around the time of his surgery this past June.  Maybe there will be hope for answers or new ideas on Thursday?  I really don't think so, but Pete and I have no other choice right now.  We need to keep searching for why this is happening to Owen.  We just need to keep moving forward- even if the future is filled with terrible things for our boy and his life with us.

As Owen battled for his life on Wednesday, Pete was with our amazing doctor, Karen.  He had the opportunity to speak on a panel at a palliative care conference for about 200 area physicians.  Pete provided a parent's perspective about coordinating care with medically complex children who have a poor overall prognosis.  I am extremely proud of him for doing this.  I read over the notes he had written prior to the panel, and the message he had to share was so important: We can accept the realities of our child and diagnosis, but we need help and guidance about making decisions for care related to the big picture.  With palliative care, it is less about 'fixing', and sometimes those who have spent their adult life training to heal and fix have a hard time recognizing this reality.

Even in the dark times we are experiencing with Owen right now, he continues to inspire and motivate us.  It is occasionally hard to feel blessed to be Owen's parent as he screams from 2-4am, but in the quite moments, Pete and I know he has shown us how important it is to live life in the present. We try to be grateful for every moment we have with Owen...even the 2am moments.