Posting to Sadie's blog has taken a back seat lately as we prepare for her upcoming surgery. I hadn't realized all the minutiae involved with a child undergoing such a surgery. There is coordination between doctors, hospitals, insurance companies, therapists. Conversations about pre-op medications, post-op therapy. In these weeks leading up to her surgery, we've been trying to do our best to not expose Sadie to any unnecessary viruses and have generally been trying to keep her as healthy as possible. We've hit a few stumbling blocks with feeding issues and oxygen saturations. But, she seems to have bounced back OK. We've also been doing some things to take care of ourselves during this time, because we know that the road ahead will be full of uncertainty.There are a number of things that we simply will not know until after her surgery. For example, how her feeding will be handled - if she'll be able to eat by mouth, or if she'll need a temporary (NG) feeding tube. What her post-surgery rehab schedule will be. How long she'll need to be in the hospital, etc. etc.
We DO know that the surgery will last between 3-5 hours. The doctors will be removing her right frontal and parietal lobes of her brain. Surgical recovery will be between 5-7 days, followed by an intense rehab schedule, either inpatient or outpatient, or a combination of both. Sadie will have a scar behind her hairline on the right side of her head. Stitches will be involved. There will be a trip back to Cleveland in 6 weeks, 6 months, one, two and three years to assess the success of the surgery.
The uncertainty of it all is unsettling. Particulary for two people like Adin and I who thrive on consistency, routine, and pre-planning. But the hardest uncertainty of all is not knowing how her little body will react to the surgery. Worry has engulfed us both. Thinking about anything but her surgery is extremely difficult. We certainly HOPE and PRAY the surgery will help to control her seizures - but nothing is certain. And the not knowing is the hardest part.
Please continue to keep Sadie in your prayers through the difficult weeks that lie ahead.
The Paschals will definitely be sending prayers from Charlotte.
ReplyDeleteso much love and many prayers are being sent to you guys......you're always in my thoughts.
ReplyDeleteWe are thinking of you guys and Sadie, and hoping that this surgery will go well and be able to minimize her seizures. <3
ReplyDeleteCathy, what day is the surgery scheduled? God bless and best wishes for a smooth and safe sugery. Sadie is so lucky to have such strong parents.
ReplyDeleteI have been following your blog and appreciate your postings so much. I am the proud nana to Piper who is 5 months old and has aicardi. Your blogs have been informative and inspirational to me. I am keeping sweet Sadie in my prayers as well as your family. You have a beautiful little girl!
ReplyDeletePiper is also experiencing seizures, about 300 a day. She is on the ketogenic diet but so far no real change. Her mommy also keeps a blog. Thekoozers.blogspot.com. "baby steps"
We live in Tennessee and I just wanted you to know you are not alone.
~Betsy. Bkoozer17@yahoo.com
Cathy and Adin
ReplyDeleteSending strong PINK healing thoughts and prayers for you and Sadie-
Love and Peace be with you!
Denise from St. Martins-
Cathy, Adin, and Sadie,
ReplyDeleteWe have been following your blog ever since we attended Sadie's benifit in Southbend. Even though you know us very little we want you to know that we think of your family often. Our prayers are with you as Sadie goes in for surgery and for her recovery.
Love,
Shane and Samantha Turay