Okay, sorry I haven't posted anything since we got home from the hospital, but things have been a little hectic and overwhelming. The doctor's actually removed a much larger piece of Arron's skull than they had previously anticipated. It was supposed to be a thin strip in an L-shape. But once they got in there, they found that there was a small depression in Arron's skull, and the bone in that area had already begun to thicken. Dr. Hopper was concerned that Arron's skull would not push itself out if he left that thicker piece in place. So, he took out, what looked to me, to be about a 2.5-inch-by-4-inch piece. Because the piece of bone was much larger than expected, they had to make a second incision on the back of Arron's head to be able to get the bone out. That incision is looking GREAT because he's always wiggling his head back and forth so it has pretty much no scabbing on it. The one on the top of his head is harder to see because of all of his hair, but it's got a lot more scabs on it. I'm sure they're ready to come off, but I'm too chicken to try and loosen them since his stitches haven't dissolved yet.
This is the incision on the back of his head.
This is the expected incision on the top of his head.
I can't remember if I covered this before, but they pull the bone out, and have a fancy little machine that crushes it up like gravel, and then most or all of it, actually goes back in his head, to give his skull something to work with to knit itself back together. They said we didn't need to worry about holding him any different or anything, just try not to poke him in that spot, just like we wouldn't poke him in his soft spot up top. Seemed to me like it would hurt if somebody touched the gravel that had just replaced part of my skull....but I'm not a doctor. So I just smile and nod!
He's doing well for the most part, but it hasn't been particularly easy getting him off the Oxycodone. I actually called the clinic yesterday for advice on how to ween him off of it. I'm guessing at this point, it's more like tiny withdrawals than lingering pain issues. At our follow up I'm going to suggest that they create some sort of a guideline to print and send home with parents for at home dosing. For me, I was scared that he was going to be in pain if I spaced the doses out too quickly and since it takes 20 or 30 minutes for it to kick in once you give it, he was just going to be screaming that whole time, making his head hurt even worse. And the fellow that did our discharge said they just like to see them off it within 2 weeks of surgery. (The ARNP informed me yesterday, most kids don't need it for more than 4-5 days after surgery, and after a week, they start to develop a tolerance and then need to be weened.) So I probably spaced things out too slowly and kept him on it longer than he needed it, but we are getting there. He's down to the absolute smallest dose that's still therapeutic, and he's only getting it every 8 hours. If we can maintain that schedule all day today, tomorrow I will try every 12 hours.
We had his echo on Monday, and that looked totally normal. PTL! So we don't need to see a cardiologist. He's had his blood pressure checked twice since we came home, and they were both normal! So, as long as his follow up renal ultrasound looks okay, the nephrologist will just chock it up to too much fluids for his little body to deal with so quickly, given the small size of the ducts for draining his kidneys. So fingers crossed that we have normal ducts in 11 days!
Rocking the sock that helps them get a good scan for his helmet. You wouldn't know it by this picture, but he screamed most of the time he had it on.
We got him scanned for his helmet on Monday too, and he's already had some positive growth! Woo hoo!! We pick up his helmet tomorrow afternoon, and then we will have to do the break in over the weekend. :( Hoping it goes smooth and I don't have a screaming baby all through the Super Bowl. Pray for me. Or him. Or both. And the Seahawks. GO HAWKS!!!
Okay, back on topic...we follow up with our surgeons on Monday the 9th, and he also has his follow up renal ultrasound that day. That week we will do a trial run with daycare to make sure all is going well and the gals running his classroom feel comfortable with him coming back, knowing what to do if his helmet gets turned funky, etc. I go back to work the following week, on Tuesday the 17th since Monday is a holiday. We won't see our pediatrician at Children's for another 2 months or so. Our regular pediatrician just put in a referral for his physical & occupational therapy so we can get his neck fixed so he doesn't just flatten out again because of his torticollis. So everything is moving in the right direction, now it's just going to take time, and work with the PT. I'll post a pic once we have his helmet.
