Today has been a rather quiet day, which is a good thing. We increased Gavin's Morphine, which seems to be helping his discomfort. Tomorrow we will be talking with the Pain Team about possibly using a Fentenal Patch, though because of Gavin's size it might not be possible, but we'll see. Gavin cultures that were drawn yesterday are both positive for the nasty gram negative rods with a little note on the bottom that reads possible other organisms -- great.
Madison and I took a much need breath of crisp fresh air this morning. She has been having a difficult time here. Although we have not talked with her about things I think she probably picks up on a lot -- well, I know she picks up on a lot. I know all she needs is me. Adam does a great job helping her with things but she really just wants to spend time with her mommie -- which is just so hard because I just want to spend time at Gavin's side trying to comfort him. Learning to find a balance is difficult but I'm really trying hard.
I find these photos to be simply amazing -- just because they are simply Madison. Her personality shines -- her beauty is so strong both in and out. Please pray for our little girl. So much is going in our life right now not only sad things but also amazing things and I think that is hard for her four year old mind to cope with. Even Adam and I struggle to balance out the really happy emotions along side the very sad ones.
I just wanted to add just so we all are on the same page -- nothing has really changed in Gavin's condition. He has been getting progressively worse over this past year but nothing recently has really changed. It's just Gavin care that is changing. Our Doctor said that he can probably be keep Gavin alive for a very long time -- but he can not give him quality of life. We talked with the doc awhile ago and we all decided that quality is more important to us than quantity -- so that's what we are shooting for. Just wanted to clarify. Yes -- it is a very sad transition but one that will ultimately lead to Gavin's comfort and happiness.