Update as of 3/20/06...
Wow, where to start... well, the cold/croup season was NOT kind to us... Billy and his brother Nicky both had strep throat, and a couple mystery viruses that had them home from school way too many days for my peace of mind! My boss at the hospital where I volunteer on Wednesday afternoons must think I'm an absentee employee for all the days I had to call out with a sick kid at home, ugh... Billy's weight that he had just gained from the summer (when GI was worried about his weight loss) went mostly by the wayside since he wasn't feeling well and not eating. Thankfully, though, he did gain it back again, so now he is a full pound heavier than he was this time last year, although he's three inches taller!
Unfortuntely, this growth spurt seems to have done a number on his spine, as his orthopedic appointment yesterday suggests that his scoliosis has progressed after being stable for the past three years or so :( They weren't able to measure the curve, because he was so full of gas or stool that the intestines were obscuring the view of the lower spine where his curve is, but doctor was pretty sure it had changed for the worse even though he couldn't do a measurement. (You can see the old and new xrays on Billy's Spine Page) We are scheduled next month for another 3D CT scan to measure that against the previous one in 2004. If he is progressing, ortho thinks it is time to discuss fusing the abnormal area in the summer or fall to prevent further problems. The normal side of Billy's spine is growing but the smaller side is not growing at the same rate, causing the curve to worsen. This is a pretty big surgery, and I'm not looking forward to it if we have to do it. It will involve putting metal rods in the area, bone grafts and screwing the left hip to his spine, and most likely some kind of body cast to immobilize his left hip while the fusion solidifies... but better now while he is young than older, I guess. We also found that his left lower leg bone has twisted so his ankle and foot aren't lined up anymore. That can be corrected when we do the leg lengthening surgery at a later time though. We also got a new, better supporting foot/ankle brace moulded in fun Star Wars colors of black and red, so Billy was happy about that :)
We also have to find out WHY he has so much gas or whatever inside his GI (gastrointestinal) system. The GI doc has us testing for some common causes (other than the most obvious, the constipation issues from his anorectal malformation complications and slow motility of the colon) to make sure we don't overlook anything, and we will see the general surgery department next week to see if his bowel management routine (daily laxatives at the moment) needs tweaking to get him cleaned out. Too much stretching of the colon can cause continence problems if unchecked.
So, looks like we switch to problem solving mode after a while of watching and waiting. Keep your fingers crossed that the CT scan isn't bad enough to warrant surgery! Also, we see urology and neurosurgery next month, so hopefully we will get good news at those appointments!
Posted by conni60640-ivil
at 9:24 PM EDT