May 9, 2016 "Casting #17"

Well after 17 casts, I'd say Rayden is officially a professional!! He didn't cry at all. He just lies there so patiently like a little adult! He even tried to share his paci with nurse Ruth!

Dr. Cuomo put Rayden's casts on this time. She and Ruth made sure to make his knees bend quite a bit. They even used the glue again to ensure that the casts do not slip. Hopefully these casts will not have to be removed until he goes in for surgery.

Dr. Cuomo talked about Rayden's upcoming surgery next week. She discussed some of the steps as to why it will take about 5 hours!!! It will take a while to get him to sleep. Then she will position him on his belly, which will take some time to get him just right. Then she will spend about 1 1/2 hours on each foot. Followed by casting and wake up time. After she examined him she decided to make two incisions instead of one. 1- In the back to open up the capsule of ankle joint and remove a section of his achilles tendon. 2- Even though he has had lots of casting, there is still too much tightening that is folding his feet inward. He will need another incision on the inside of both feet, in the center, to release this tightness.

We also discussed Rayden's ability to feel his legs but NOT his ankles, feet or toes. She stated how she works with her anesthesiologist during surgery. If his heart rate elevates during surgery she will know that he may actually have more sensation than we are aware. This lets her know more about how much he is REALLY capable of feeling. What we feel on the outside is not NECESSARILY what we feel on the inside! She will relay this info to us after surgery and of course will send him home with pain medication. I am anxious to know what his level of feeling may actual be.

May 10

Rayden had an appointment with Dr. Sanderson, nephrologist. She actually mentioned he may grow out of high blood pressure!!!!! GREAT NEWS!! His goal for the top number was less than 110. After only one medication adjustment these past three months he has steadily been under 110. She wants us to continue monitoring his blood pressures twice a week. I was thrilled when she stated that she was actually on call at the hospital on Rayden's surgery day. She wants me to tell the anesthesiologist that she will be there if there are any concerns and she will be sure to check on him. That was reassuring.