The Dark Day

After a turbulent weekend, this Tuesday started like any other.  I was resting and mom and dad came back to the room to see me.  They had been staying in one of the resident's rooms where doctors can sleep between shifts.  Dad was being crafty and to make sure he didn't lose the room, he was holding on to the key for dear life. 

The doctors said they were going to meet with mom and dad to discuss my situation.  This was going to be later in the afternoon however we had already been given some pre-warning that the news was not going to be great.

The afternoon came around and the doctors asked mom and dad to go with them.  I laid back and relaxed as they left the room. 

Dad here, Ethan wasn't around for this part so our story-teller will be me for a bit!

The doctors took us to a room they called the family lounge.  The lounge was an 8x8 room packed with 2 couches and 4 chairs.  We were sat together on the loveseat and Dr. Kozenko, Dr. Gilleland, our nurse Jen, a social worker and several assistants poured into the room.  Total population count of the room was up to 9.  With square footage at a premium, the discussion began.

Dr. Kozenko started the discussion by explaining in broad terms how the cells of the body process glucose and convert it into energy.  She drew us a map of the cells and walked us through the process.  They have suggested that Ethan has a break in the cycle at the point where Lactate acid is converted back to glucose.  There are two enzymes that are responsible for this process and sadly neither of them can be synthesized.

Dr. Gilleland spoke next.  He mentioned that he had been reviewing Ethan's case data and wanted to bring us up to speed.  He recounted the tale of Ethan the puzzle in his own words to make sure we were all on the same page.  He then discussed the prognosis.  He reminded us the enzymes that appeared to be missing cannot be synthesized and ultimately this meant that there is no cure.  He reiterated by saying "There will come the day that you will leave this hospital without Ethan".  This brought a swell of tears to the back of my eyes.

Fighting the tears and rubbing Leeanne's back, I understood this to be the likelihood.  He went on to say they will continue to do whatever they can to continue the stabilization of his blood chemistry.  He then noted that based on his prognosis, there are certain issues that needed to be discussed regarding life saving measures.  He noted that if Ethan began to deteriorate, they could use breathing tubes or other means of resuscitation however based on his prognosis, these measures would not change his outcome.  He asked that we think about whether we wanted to put him through the added stress given the expected outcomes.  Dr. Gilleland and Dr. Kozenko reminded us that hope was not lost and that there is a chance that his body will simply grow and adapt to complete the cycle that is currently broken.

The doctors finished up by recapping the whole visit to date and left Leeanne and I to discuss things.  Our discussion took the form of tears dampening eachother's shirts.  After some time we discussed the issues and decided that it didn't make sense to put him through anything that wouldn't ultimately change his outcome.  We were resolved in our decision but saddened to have to make it.

This day had become the darkest day of our lives.  Both our parents came and Leeanne's brother came to visit.  We sat around the coffee shop table not saying a whole lot and sharing glances of love, support, sadness and hope.  In this time, our family grew a bit closer and we each tried to comfort and strengthen one another.

We returned to Ethan heavy hearted but resolved to treasure what time we were going to have together and hold and play with him as much as one child could ever stand.

Shawn out, I'll hand things back to Ethan now.

Mom and dad came back to the room, I could tell they weren't happy but I knew they loved me very much and that we were going to be together through whatever they threw at us.  The dark day still had a ray of hope.