Our experience with CMC started in 2009 when we began seeing Dr. Susan Massengill (peds nephrologist) to follow-up on our boys who have a rare syndrome (Conorenal Syndrome) that affects the kidneys, bones and vision. They’d been diagnosed in 2000 while we were living in Winston-Salem, N.C. and then we moved to Concord and decided to see someone closer.
Our younger son has a more severe expression of the syndrome and so it was Thomas who was being closely monitored by Dr. Massengill. He also had scoliosis (diagnosed at age 7) which we were going to Dr. Wattenbarger to monitor it. So, when his curves progressed so much that scoliosis surgery was necessary, Dr. Massengill was concerned that kidney failure would happen due to the stress of the surgery on his little bit of kidney function.
On May 23, 2011, after much coordination by Dr. Massengill, the spinal fusion was performed (also a permacath was inserted in case hemodialysis was needed) and was mostly successful. The upper curve was unable to get straightened due to all the blood loss and renal issues. We will probably go back in June to complete his spinal fusion.
Thomas went to the PICU for two days and then the 10th floor where on the fifth day post-op, hemodialysis was started due to worsening kidney function. He developed an ileus and since he was getting dialysis, he was moved to the 8th floor. After 12 days in the hospital, Thomas was discharged! Then we spent the rest of the summer coming to CMC Pediatric Dialysis Unit for hemodialysis twice a week.
Back in 2007, we had gotten worked up to be possible kidney donors for Thomas, and Jay was the best match. So, CMC worked him up to make sure they felt he was the best match and we worked on getting Thomas stronger and healed from his seven-hour scoliosis surgery. On September 20, 2011, Jay and Thomas underwent surgery in OR suites side by side and Jay’s right kidney was removed and placed into Thomas. It was a bit sluggish at first and had to be coaxed into working, but now we are 11 weeks out of surgery and Thomas’ kidney functions are normal and he feelfs terrific and looks great!
We can’t praise the teams enough for all the care and compassion given to us during these two big surgeries. Dr. Wattenbarger’s orthopedic team was fabulous and worked so hard to keep Thomas stable in the PR and well. The PT folks did an amazing job teaching Thomas how to get out of bed and moving after the spinal fusion.
The nephrology team was right there the whole time monitoring Thomas’ kidneys and making the right choices. The pediatric dialysis nurses were dedicated, skilled and able to get Thomas to open up and be comfortable with his treatments. The transplant teams (one who represented Thomas and one who represented Jay) were fabulous with their communication and went out of their way to answer all our questions and to make our stay in the hospital as short as possible (Jay got out on day four post-op and Thomas got out on day 10 post-op). And lastly, the pediatric nephrology team has been amazing post-operatively as we went from three times a week labs and visits, to twice a week, to once a week and now finally to every 2-3 weeks. We feel blessed beyond measure to have moved to Concord and to have had the opportunity to have such a world class Children’s hospital to come to with amazing physicians and staff!
To learn more about pediatric nephrology visit The Pediatric Nephrology Program at Levine Children's Hospital.