Today we took C to spina bifida clinic. Although he doesn't have spina bifida, since he sees all of the specialties involved they let us come to avoid multiple trips and appointments. Such a blessing. Carter was a rockstar for x-rays and ultrasound, and then we moved on to the doctor visits.
Urology - Dr Joseph
Dr Joseph came by and checked out C's vesicostomy and read his renal ultrasound. He wasn't thrilled with how dilated his ureter looked, so we'll have a repeat ultrasound when we go back for nephrology and infusion next month. He also laid it out for us very plainly that eventually Carter's kidney will fail. Nephrology always uses the phrase "outgrow it's function" and apparently that means "WILL fail." We're thankful for that wake up call so we can start screening our friends by blood type to find a donor ;) Just kidding. Our one question for him was a timeline on the reversal of his vesicostomy to a cathable channel. He's not in any hurry to do this as he doesn't want to disrupt his semi-stable bladder and kidney. We're good with that.
Neurosurgery - Dr Blount
Carter told him he didn't look like a doctor. He loved that. C showed off his walking skills, and let him check out his scar. Our question for Dr Blount was in regards to his un-tethered cord re-tethering in the future. Essentially his answer was that until there are symptoms pointing to a possible re-tether, we wouldn't worry about it. It usually doesn't happen until a big growth spurt, and would be made evident by loss of sensation or function in the Southern Hemisphere of his little body (leg numbness, pain, loss or degradation of mobility in the feet and legs). 6 months before we see him again.
Orthopedics - Dr Conklin
C showed off his walking skills again and Dr Conklin was very pleased with his mobility. His scoliosis x-ray looked very close to the previous appointment and is still not a concern. We talked extensively about his dislocated hips. I've done a lot of research since he explained that a surgery would be very difficult to get both hips symmetrical and functional. The question for Dr C: what's the long term prognosis of leaving his hips un-corrected? My primary concern was that he would have pain as a byproduct of mobility. He explained that kids who have hips that come out during or after birth and have corrections typically have a greater chance for dislocations repeating, or bad placement of the femoral head in the hip socket, which causes friction on the cartilage and bone in those areas, and thus pain. Since Carter's pelvis never formed completely with sockets, his femoral head rides high on his pelvis and doesn't form a joint anywhere. He said with a deformity like this, while mobility can be more limited, the likelihood of pain is very low. Eventually he will probably develop some type of arthritis as a result of his anatomy, but he expects it to be much later in life (as late as his 50s!). We talked about some of the cases in our support group, and he asked how many kids had or hadn't had their hips corrected, and we discussed that his case is so much LESS complex than most of the kids. The majority of these kids have bladder or cloacal Extrophy and need osteotomies done, and it's all corrected in one major surgery, or resulting revision surgeries for the "big" surgery. He is so very knowledgeable about such a broad range of complexes and defects, in addition to his general ortho skills - we love our doctors! 6 months until we see him again, as well.
We're glad to have our questions answered, and to have some rest in the fact that there are still no surgeries on our schedule for quite a while. Please be in prayer that Carter's bladder and kidney continue to function well, and for this battle with anemia to end soon. We appreciate it!
