We walked the 10 minutes from our hotel to the hospital this morning. No food or drink before surgery is the rule, so it was good to be outside away from the possibility of making a mistake.
Ava was very calm this morning. She was very patient with the many people that came into the prep room. Thankfully, there were ‘no pokes’ (she very much dislikes IVs or blood draws).
They made the first incision at 9:56 (Ohio is one hour ahead of Minnesota). She is laying prone, belly-down right now. One surgeon will harvest sural nerve from each leg. It is done by a small incision and snip behind her knee and above her ankle. Then, an incision half way between to pull it out. This sural nerve will serve like an empty tube for healthy attached-to-spinal-cord nerve to grow through. Ava will lose feeling in the outer side of her feet, and the numb area should shrink over time. While one surgeon does this, the other is working near her shoulder blade, transferring half of her spinal accessory nerve to he suprascapular nerve. This will help stabilize her shoulder and rebuild that area. Ava will always have thinner muscles surrounding her shoulder blade area, making it appeared a bit winged.
When they finish this, they will turn her over and we will receive an update.
I will just update this same post throughout the day, as I receive more info. Right now, we are feeling very peaceful with this decision, this surgery, this place.
****update 12:00 Ohio time, 11:00 MN time
The harvest of the sural nerves as well as the nerve transfer from her spinal accessory nerve went as planned. Her vitals have been holding steady. Now, they are exploring her right brachial plexus and sorting through the scar material.
****update 3:00 Ohio time, 2:00 MN time
We just received word from our nurse that the scarring was much worse than anticipated. It took them about 2 extra hours to work through the neuroma but they eventually exposed workable nerve endings. They are now exploring her left side and it’s 5 nerves, to nail down specific function before hopefully ‘stealing’ her C7.
****update 5:00 Ohio time, 4:00 MN time
They feel they correctly identified C7 on her unaffected side, and have it grafted down to her lower plexus. This is our hope of some hand function. Had they not been 100% sure of their intraoperative testing, they would have left it….so this is a huge reason to praise the Lord. Now, they are working on her C5 (the one of the 5 nerves that was not avulsed) to split it for other uses. The huge waiting room here has seen many faces today, but it is nearly emptied out now. We are calmly awaiting them to call our name to learn the details of the surgery and then go back to be with her.
****UPDATE 6:00 Ohio time 5:00 MN time
We met with Dr. Schwentger and Dr. Yakuboff and they said, despite the extra length of the procedure, surgery was very successful. Her C5 was indeed a healthy, good-sized nerve and they were able to aim for some additional function with it. Both surgeons agreed on keeping her in the hospital at least two nights. They also said that given the floppiness and low tone of Ava’s muscles in general, as well as the depth of her surgery, to keep her in a sling for the next 3 weeks except for clothing changes. We feel as though, even though we certainly aren’t out of the woods, that a huge weight has been lifted from us, and we are so thankful for this day.