Pack A Bag

Last month we went to Children's for a full day of appointments: renal ultrasound, urology, iron infusion, and nephrology. 

C's renal ultrasound looked better than the month before. Dr Joseph also talked to us about some options for preventing UTIs if he kept getting them so frequently. The first option is to revise his vesicostomy, or we can look at switching to a urostomy (from the ureter, before the bladder). He said eventually he may do some bladder reconstruction. 

Infusion went as usual, but our nurse practitioner from nephrology popped in and asked about any symptoms because his labs were alarming. His creatinine had doubled, his bicarb was out of whack, and his iron had dropped even lower since his previous infusion. He had run fever over the weekend and his urine started showing symptoms that Monday morning. They ultimately decided to admit him until they knew there was an oral drug he could go home on. 

As always, Children's was a humbling experience. I shot a message to our small group that we were missing and they covered us in prayer. It was so different being in the new hospital with a mobile toddler. We took advantage of the many Child Life offerings and he ate all of his favorite foods every day. We had nurses from his infancy that cared for him and loved on him. We spent Wednesday night with our church family virtually from our room and were blessed immensely with a message on spiritual warfare. 4 days of abnormalcy to remind us of how far we've come. 

Fast forward a month and we're back in Birmingham for another iron infusion and a follow up with Nephrology. 

C's had some symptoms of UTI (bladder pain and cloudy urine), so I've been a little leery about this visit. The nurses at Children's swear by packing a bag to "ward off evil spirits." Last night we packed a spiritual bag by praying proactively. Our small group covered us in powerful prayer, and we prayed with C that his appointments would go well and his labs would be stable. This morning I packed a ceremonial bag with changes of clothes and toothbrushes, and we headed north. 

We're currently pumping iron and Mary Jane just popped in. His labs look good and we're going home! She's going to get a urinalysis started to try to catch anything that may be growing, but otherwise his kidney looks awesome compared to our last visit. 

Carter is the toughest kid and I couldn't be more thankful for his presence in my life. He teaches Josh and I so much about life, faith, and love. God is GOOD! Thank you for your prayers!

SB Clinic

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!