This won’t take long.
I’ve got a kid to snuggle and a book that’s begging to be read but I thought I ought to say a few things first.
This hospital stay was hard.* Not because it was long (it wasn’t) and not because Simeon was in grave danger (he wasn’t– not really) and not because hospital food didn’t suit my pregnant palate (they actually have a pretty good spread). It was hard because it reminded me.
The thing is, we’ve had the trach and the therapy and the wheelchair and blah blah blah, but it’s been over a year since the dangerous side of spina bifida has visited our family. It’s easy sometimes to forget the realities– to forget that there are parts of this life that, although they remain infrequent visitors, could take my son away from me.
This surgery felt like a reminder. A reminder of the hamster-wheel that is spina bifida. We are running a race without an end. We are having surgeries that will patch, not heal. We are watchful and vigilant.
There is no “out of the woods.”
There is no putting this “behind us.”
I’ve said before that life with SB is ninety to ten. 90% lovely and normal and free, 10% rough and tough and challenging. I guess everyone’s life is like that, though. Up and down. This week was a 10% week. But it’s already fading back to the 90s.
So, thank you.
Thank you for your kind words and encouragement this week.
Thank you for your prayers.
Thank you for helping me laugh about the horrible surgery “haircut” that left my child looking like a Nickelodeon bully.
Thank you for the comments, and chats, and texts.
I don’t care what they say about the Internet, and relationships, and modern society, and connection. When you’re living in the hospital and visiting hours are over, online friends are real. You guys made a difference to our family this week.
- Simeon has been getting progressively grouchier for the past 2 or 3 weeks.
- He started refusing food at times (a breakfast here and there– nothing too alarming) but then he refused ice cream and I was like HELL HAS FROZEN OVER!
- He was crying out in his sleep. Sometimes whimpering, sometimes full on screaming.
- His nurses started to worry. Since I see him everyday sometimes it’s easy to overlook gradual changes. When we got back from the beach, a few of his nurses commented that he was acting “off.”
- We took him in for an MRI (we try to avoid CT scans when possible because of all that nasty radiation), which showed that the fluid in his brain was not draining properly. Time for a new shunt (see below).
- The surgeon said his shunt was completely clogged and not working at all. He said it had probably clogged slowly over the past few weeks (hence the progressive increase in scream-tantrums around here)
- A new shunt was placed and we were home within 24 hours. Brain surgery, shprain surgery.