November 2, 2010

This is our little pumpkin Anaya on Halloween out trick or treating in the local mall. Of course we know that she can't eat the candy - but hey I can :) I wanted her to have an authentic western Halloween experience. So we went trick or treating in costume just like the other toddlers. Oh and were there ever cute costumes everywhere!

Anaya has been much better secretion wise the last few days and we are getting better sleep. I'm so grateful for the good nights. I love waking up in the morning to her sweet little mews. It's like she's saying "Good Morning Mommy!" We snuggle for a time, warm in our blanket and plan out our day. Lately I've been working on researching for my business plan, writing my business plan, taking care of Anaya and my family's needs and having a night to myself on wednesdays. Whew! It's all very manageable when Anaya is doing well. I'm fortunate to have the flexibility that if she's not doing well I can be with her. I love working from home.

Lately I've been thinking about our trip to Calgary to see the surgeon about the G-tube. I really feel good about how she is doing all around. I think she is pretty stable with her breathing an apnea. She has not had repetitive apnea in a long time. I think that the part of her brain that controls her breathing is in pretty good shape. Last time they wouldn't do the surgery because they thought there was a good chance she wouldn't survive. They thought that the extubation (removal of the breathing apparatus) after the surgery would go badly, and as we are not wanting her on life support, she would die.

There is still a very real chance that she could die from the extubation now, but I do believe it is less than it was before. It's so hard to know what the right thing to do is. I want her to be comfortable and happy in her life. I know that the NG tube she has in her nose has caused incredible discomfort and irritation. Her whole nasal passage was swollen closed to the point we couldn't even get the tube in! Is it worth the risk of possibly dying to gain more comfort? These are hard questions. Her life expectancy is short...with the possibility of things becoming much much worse. Painful seizures, and loss of hearing are some of the expected symptoms.

Where do I place my faith? Do I trust in "God" to take her when the time is right?, do I trust my instinct, go forward with the surgery and just know that her time is her time? How will I assuage the guilt I'll feel if she does die on the table? Since the moment I found out my baby was sick I've been willing her to push forth, hoping for a miracle. Wanting her presence in my life to continue.

In order to proceed with the surgery, I will have to let go of the expectation that she will survive it. I will have to accept the very real possibility that the time before the surgery might be the last kiss, the last snuggle, the last mew. During the extubation I might have to hold her in my arms and watch her fade away, turning all shades of blue and grey. Returning home with empty arms to a life without a centre and a home full of her belongings. Having to pack up the momentos of her life, knowing I chose the surgery.

On the other side she might come through with flying colors. Things go just as they should and there are no complications. We get the surgery done immediately and extubation is a snap. She has no infection problems and the pain from the button is manageable with pain relievers. We come home a week later.

Those are the thoughts I've been having. Weighing the risk against the benefit. For now I'm just going to put on some nice piano music for my little love and watch the sound caress her being. I can tell she loves it.