There have been so many times over the past year that I feel like I'm living a nightmare and I just want someone to pinch me and I'll wake up. I guess in a way -- looking at our life as just a dream and not really our reality, is just another way we cope. Today was another day where now, at the end of the day, I look back over the last 12 hours and wonder if it was all just a bad dream or is this really all true.
Sadly it is all the cold hard truth.
This evening Gavin was admitted to duPont. He has been in bad shape over the past few days and this morning we felt like he was to unstable to be at home. After an emotional conversation with Gavin's doctor it was decided that Adam and I needed to site down with Dr. R and talk about things.
Tonight we finalized Gavin's DNR. Tonight we all talked about Gavin's death. Tonight for the first time I heard the words, "when Gavin dies."
No mother should ever have to hear those words spoken about her child. It's sucks and it just seems unfair.
We are switching a lot of Gavin's care around. He will be made comfortable at all cost even if it causes more harm and speeds up the process. He will be given narcotics to help ease his discomfort along side a few other meds to help his agitated state. We will be keeping Gavin on heavy duty antibiotics and antifungals to keep him infection free as long as possible before the superbug grows and we are done.
There are so many other things are we are needing to make decisions on. Please pray that Adam and I have clarity of mind to do this. We want to make Gavin happy and comfortable -- and sadly that most likely means a shortened life.
I'm not sure if I should be posting this or not. On one hand Adam and I live this life everyday and all this talk is just another chapter in our story. For some of you this is hard to read and may even be shocking -- and for that I'm sorry.