Colten is scheduled for surgery on Monday, November 4, 2013. His last surgery, his shunt revision, was November 6, 2012. SO CLOSE to making it a year without a surgery! Actually, I’ve read a number of different blogs from families with Spina Bifida and/or other complications and the fact that we made it this long without any surgeries is pretty awesome and we’re thankful for that. However, Colten is having surgery Monday.
I’ll start at the beginning of our day… Colten and I left for Ann Arbor just before 7:00 AM this morning (with special thanks to Cousin Coco for dragging her butt out of bed to stay with Parker and Max for a bit this morning!).
8:00 AM – Orthotics & Prosthetics Clinic
We snuck in an early morning visit to Mark at the O&P clinic because Colten has some new ridges that have formed on his head in places they should not be. Instead of growing out side to side in the helmet, his head prefers to grow up and out the top. Mark re-measured him and while the plagiocephaly seems to be mostly evened out (this is a diagonal measurement from front-right to back-left compared to front-left to back-right – like a big X on top of your head), the scaphocephalic shape (torpedo or football shaped front to back) is still quite off. So Mark made some cuts in the helmet to put a more localized pressure on the forehead and it’s a guessing game from here. He’s not confident it will help – it could in fact just force it upward in the new area, but we’ll give it a few weeks and see what happens. Then we can either keep it on if we’re seeing progress or be done with it entirely and it is what it is.
There are a few things still concerning us about the shape of his head – it’s not just for looks! One is that he has an Arnold Chiari II Malformation (it goes along with Spina Bifida). In short, this is when the back part of the brain, the cerebellum, drops down into the spinal column at the base of the skull. If I recall correctly, the malformation is part of what contributes to his hydrocephalus as well. This Chiari II can be mild or severe, symptomatic or asymptomatic. Colten’s is mild and asymptomatic. Yay! Our concern is whether a too-narrow back of the skull will make it more likely that his Chiari could worsen or become symptomatic. Surgery for that issue is a doozy! The orthotist recommended we refer that question to neurosurgery so we’ll come back to that another day. Another issue is a bit selfish – a bike helmet. Our family bikes a lot — we take the kids, everyone wears helmets. We of course want to include Colten in that and based on his head shape, a helmet will be difficult to properly fit for protection. So if we cannot find one that works, we’ll have to explore some custom option for him. The last issue (besides of course that this kid makes it really difficult to get a shirt on over his head) is his left eye. It tends to float inward more often than it should and one doctor told us that because that side of his head is flat, it’s possibly pressing on the external eye muscles which control that motion. That doctor felt that as his head rounded out, we would see that improve. So far it’s not getting much better so we’ll watch that and talk with one of his other doctors about that in the coming weeks.
9:00 AM – Pediatric Orthopedic Surgery Clinic
It has been about a year since we have seen Dr. Li. Colten had great hip sockets at his last appointment (yay to babywearing!) so there was no hip displaysia to be concerned with. His feet were not clubbed at birth (common in babies with Spina Bifida) – they were calcaneo-valgus (or something like that; no paperwork in front of me), which is out and up. His feet were (are) large, floppy and incredibly flexible – the one could fold flat up onto his shin! We did a lot of stretching early on to help release them downward and she was happy with how they’ve grown. She reiterated that he’ll continue to need more advanced bracing as he starts weight-baring. But she fully released him from care until needed! His braces and therapies are all handled currently by the PM&R doctor (Physical Medicine & Rehabilitation), so at least this is one less visit we have to maintain (although at 1/year, it wasn’t hard to squeeze this one in!).
10:00 AM – Radiology
Colten had an ultrasound done to check the condition of his bladder and kidneys. Because people with Spina Bifida often have bladder and bowel issues, this is something checked often and carefully monitored. Right now we go every three (3) months for checks in this department. Because of how his internal organs developed, his bladder refluxes back into the ureters. This can cause damage and infection if severe or not cared for or if someone gets a lot of UTIs. Colten takes a daily (when I remember at least) medication, Bactrim, at a low dose to help prevent UTIs from occurring. A UTI can be pretty serious if not caught and can lead to kidney infections and damage. We don’t want that. So the ultrasound just looks at the organs for any damage or concerns.
10:45 AM – Pediatric Urology Clinic, Testings
Next up was a CP Urodynamics – a cystrogram and cystometrogram. They also checked him for a UTI just in case (they can still get UTI’s even on Bactrim but it’s a rare occurrence). These tests involve a catheter, liquid input and measuring of output. It measures how much liquid the bladder holds, when it releases it, and how much gets released and retained. Colten performed quite well and we are very thankful that we are not needing to catheterize him yet (cathing is very common among those with Spina Bifida – it is often a matter of when to start cathing, not if you will cath – although there are some people that don’t need to at all!).
11:45 AM – Pediatric Urology Clinic, Follow-Up Appointment
Dr. Wan came in and reviewed the results of the ultrasounds (all looks GREAT!) and the urodynamics tests (again – GREAT!). Then he did some palpating on Colten in the nether regions, as one of Colten’s “buddies” was playing hide and seek at the last appointment. That one little buddy must have found quite the hiding spot because it has not come down to play yet. Since he is over a year, it is protocol that the doctor jumps into the game and goes to seek out this sneaky little buddy. Hence, surgery Monday. It is laproscopic outpatient surgery, although depending on what they find when they get in there, it could mean 2 incisions or a few more. It could also mean part one on Monday and part two in six months. I’m not sure I understand all of the variables, so I’m not going to bore you with any of them. Once they see what’s in there, then they decide what to do and what happens next.
So that was our day. We hope yours was WAY more fun!