Like sands through the hourglass, so are the days of our lives. No surgery tomorrow. We coordinated childcare through the weekend, birthday celebrations for Kate, and church responsibilities for Matt but at the appointment with the surgeon this afternoon we were told that Maggie's doing too well for surgery. Her fontanelle seems even softer than they did a few days ago and her head circumference has actually shrunk by a miniscule amount. It's a good thing and somewhat miraculous, but it's tough to feel pulled in so many directions. Chances are she'll still need the surgery (in fact the neurosurgeon has scheduled a slot for us in the operating room for the next multiple Tuesdays just in case) but until she gets worse the docs don't feel good about doing something so permanent and drastic unless we know for sure that it's necessary. It's the right call, but Maggie seems so discontent to us. She's always been loud (rooting, grunting, pushing, snorting) but now she's spitting up a lot more and seems to cry more than usual. We'll keep plugging along, and maybe this improvement will continue. Whatever does happen though, it's going to be fine. We'll just take it as it comes--at least now the kids won't miss their dental cleaning appointments tomorrow (which we had forgotten about). We also won't have to clean the house tonight and can put that off til another day as well. Hooray for procrastination!
Maggie is out of surgery. Things did not go as planned. As the doctor put it, "she threw us for several curve balls." We could not do the ETV. Once in her brain, he discovered that it would be too risky to proceed because of her anatomy. From what we remember, her pituitary was too close to an artery. As they were pulling out, a blood vessel burst. They had to get that bleeding under control before sewing up that side of her head and cutting open the opposite side for a shunt. That's when the neurosurgeon called us to tell us the disappointing news that the ETV wouldn't work. He said he'd come back to visit us in 45 minutes once the shunt was placed. We always knew this was a possibility, but were told her anatomy was "perfect" for the ETV. Guess you can't judge a book by its cover, even with an MRI. Shunt surgeries are common, and it is rare to have serious complications. But two agonizing hours later, we were told what happened. Duri
Davy is so cute! I love how excited he looks,. You guys are awesome. Do you think you can send some of your faith to the gale's home.:)
ReplyDeleteMillie,
ReplyDeleteI am amazed by your faith and perspective, as always. I am so sorry for this setback... It'll all work out, right?! God is so aware of your little family.
Love you!
SB issues so unpredictable, but nothing we do for our SB kids is a waste of time...even when they send us home. SIGH. We caution on the safe side and can rest easier knowing we've done our part. You are amazing Millie. I hope you can get some down time this Labor Day weekend and enjoy being home. :-)
ReplyDeleteKatrina
Fellow mom w/ a SB child
I continue to be impressed and amazed at the faith the Killpack family has. I am so sorry for the setback. I hope that Maggie will continue to improve and that things will follow the correct course for her.
ReplyDeleteYour strength inspires me!!! I think about you often throughout my day and it gives me strength and hope!!! Please keep blogging ALL of it the good, the bad, and the ugly. You are such a rock and I inspire to reach have your faith!
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