The night time screaming and crying hasn't really stopped yet. We thought we figured it out, but we could be wrong. Dr. Swift (Zoe's neurosurgeon since Day 1, literally Day 1 of her life) suspects Zoe is experiencing sleep apnea, a very common condition seen in people with Spina Bifida. Sleep apnea is basically when you stop breathing during sleep. There are 2 kinds of sleep apnea that I know of and one is related to a physical condition. That would explain why she stops screaming immediately after she is picked up in the night. If she were refluxing, she would probably continue to cry and fuss. Since the surgery is inevitable, we have opted not to have the sleep study performed. It would be a colossal waste of time just to determine if she needed the surgery...somewhat redundant.
After going over the doctor's observations, he recommended bumping up the surgery. Zoe certainly needs to start sleeping normal again, not to mention Mama and Daddy. Plus he fully expects to see results right away. We will see improvement almost immediately in her swallowing efficiency, jaw strength/learning to chew, sleeping, decrease in her silent aspiration (liquid in the lungs), I could go on and on. So surgery is now happening next week. This is what Dr. Swift had available, and we didn't have a good reason not to do it at that time.
Decompression surgery is very routine...to doctors of course, not to mamas and daddys, grandparents, or aunts and uncles of sweet baby girls. To us it's much different. It's a 6 hour surgery and 4-5 days in the hospital. It's nerves and sleeplessness and anesthesia and waiting rooms. It's trying to explain pain and IV's and beeping machines and needles to a 23-month-old. It's unplanned time away from crazy jobs and all the stress and impact that has on others. On the other hand it's also a time to fast and pray and press in. It's an opportunity to use our faith in Jesus and our hope in the gospel. It's a chance for God to be glorified in our lives.
Needless to say, it's about to get ridiculously busy. There is a lot to be done this week in preparation of the next. Not only are there lots of things happening in choir world, these next 2 weeks are the 2 weeks before Music Man (I am the LHS Assistant Musical Director). Jay has a lot of big projects happening at work as well. We are fortunate though - Jay has the most understanding and flexible boss, I work with the BEST choir director and students in the WORLD, and Jay and I of course have one amazing support system in my family. (Have I mentioned how much I love my family??!!) Everyone is so understanding and sweet. We (I mostly) just have to take things one day at a time. Easier said than done.
Thank you for keeping up with us and we will let you know if anything new develops. Have a great week.
-B, J, and Z
SHALOM,
ReplyDeleteThank you for update. Here in Zimbabwe with leadership of Bishop Bartholomew Manjoro, we are praying and fasting for total healing of Zoe. We know God is able. Mark 10:27"for with God all are possible"
Zoe, by His strips you are healed.In the name of YESHUA HAMASHIAC.
SHALOM.