She was out and unresponsive all of yesterday until around 6:30 p.m. and I got a few smiles. She half opened her eyes. But the smiles were strong. I just pray she knows we are here with her and that we can make her as comfortable as possible.
Saturday, May 15, 2010
Rough Week
Macayla has not had a good week. Friday was the only day she did not throw up. She has been asleep most of the week with a few spells of semi-consciousness. Her bladder has been sluggish the last two days. Once again we are never sure if medications are making much of a difference with some of these things. We have had a lot of suctioning to do and she keeps producing plenty of crud to get out. With all of the vomiting, she runs the risk of aspiration and that could lead to pneumonia. So we try to keep her cleaned out.
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Jeff,
ReplyDeleteI've been following your blog for a few years. I honestly can't remember how I first learned about your family. I just know that I've really enjoyed your posts. A couple of them have even been quite helpful as I forwarded them to a friend with a child requiring complex care. (That beach-chair-with-the-wheels invention of yours? Amazing!!)
As a social worker in a children's hospital, I have such admiration for your family. Fueled by faith, immense love for each other, and some pretty impressive innovation, you and your wife are giving each of your children a life filled with love, comfort, and security. I have no doubt that there is a permanent part of Macayla that will always know that you are with her and keeping her comfortable.
Wishing you and your family absolute peace,
Amy
For some reason you have been on my mind this week - now I know why. With all of this going on for you and your family - it was God's way of telling me to pay more attention to you. Makayla is in God's hands and there is no better place to be. Please remember that. You are also in God's hands and surrounded by his love and the love of your family and friends. WE love you.
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