regrouping

It is not surprising that feeling uninformed going into surgery causes anxiety.  Nor is it surprising that it kindled the Mama bear fire.  FuXia was so afraid of the pain.  I have tried to coach him through pain at times, and when he's bottomed out--as he did one really hot day in summer when he found out he was expected to use his walker at school--I've had to learn when to talk, when to listen, when to give him space.  I found him hesitating to talk about his fear, and I wondered if he was trying to gauge whether talking about it would lead to a "sit-in at the driveway" moment again.  We tried to give him room to talk, and eventually he did...the night before surgery, at the table in the family dining room at the Ronald McDonald House.

Surgery went well, and FuXia has found himself in a lucky group of kids whose worst post-op pain is managed with the epidural.  He had an epidural cath and some other pain med through his IV, and it wasn't until after they had him sit up in his wheelchair for a half hour yesterday that he asked for any additional pain medicine.  He's simply felt very little pain.  I am so thankful for that.  I know there is pain to come, and pain management to come, but I am so thankful for the mercy he's had in this moment.  He began to eat yesterday, too, and he was much more alert.  But when I leaned in and whispered, "Do you feel like FuXia yet?" he smiled and shook his head.  "Not yet," he whispered back.

We hit the Lego store just outside Philly after the PT appointment the other day.  We were surprised before leaving Franklin with several gifts of money, and so we set aside a little for each boy to pick a Lego set.  FuXia had his eye on some massive $300 robot set that he's been saving his money towards, but we put him off for a little longer, laughing at the idea of the robot's wires getting tangled with his own in the hospital bed.  (UPDATE:  Just so you know, he's getting the robot.  We've been working towards it, $5 a week, for almost a year now.  Throw that with his $, and we're in!)

And that brings me to the biggest hurdle we have at the moment.  FuXia is doing so well.  YoYo has been incredible.  We couldn't ask for a smoother journey thus far.  The social worker arrived yesterday to ask about our home's setup and where we would be able to put a hospital bed.  She breezed through the scenarios we should be able to manage, waving away my protests and drawing out diagrams of the little rooms she hasn't seen.  There's more to the discussion, but I was nearly in tears by the time she was done, and the PT was ready to have FuXia transferred to a wheelchair.  His fixator is much larger and more complex than we expected, so his new chair is too wide for our hallway and I can't imagine how we'd get him in the bathroom or his bedroom.  Praying and thinking of Lego skills in my mind...

I have to head to the hospital now-after I feed this little munchkin at my arm.  Here's to hope!