Surgery Updates

We were originally told that Kennedy's surgery would be 3 hours; however, I did not realize that estimate was actually the estimated time she would be in the operating room. Surgery itself, was almost exactly an hour so the stress itself was decreased tremendously because we had less time to stress! So TCS parents, it's not so bad!

After her evaluations with the doctors, they allowed me to go back to the OR all gowned up as we had practiced. I highly recommend this to ALL other parents if your young child is going in for surgery. Practice so they are more comfortable seeing you that way (and even if you can't go back, at least the nurses and doctors won't look so strange). In the OR, they put on a movie to try to distract her. Kennedy didn't care because she's not really into TV but it was a nice gesture. She instead played with the face ring, any cords she could reach, and looked around at all the lights and nurses. They did not give her the relaxer Versid (again I can't spell the names of drugs) ahead of time like they did with the MRI but I don't think it was necessary because she didn't have anxiety going into the procedure.

When they gave her the gas, it was via an infant mask. They snuck up behind her so she couldn't anticipate it coming and held it tight to her face. I held her arms and legs down. Kennedy is a fighter so this process was not easy but I knew it was necessary and I definitely preferred to be the one holding her down over a stranger. She arched her back but we just stuck with her until she calmed. At that point, I was instructed to kiss her and leave and by leave, they mean it! The head nurse grabbed my shoulders and ushered me out of the doors FAST!


From the time they started cutting, it only lasted an hour. However, the prep time before consisted of placing her IV, giving her more sleepy medicine through that, intubating her, and placing her foley. About 40 minutes after I left the OR, they called the waiting room to inform us they had started the surgery. 50 minutes later, they called to tell us they were almost done and 15-20 minutes after that, they ushered Nick & I to a consultation room to meet with Dr. Fuchs. This is where it gets interesting.

He told us everything went well. From there, he went on to explain that the fatty filum terminale cut was easy as anticipated but that the thought to be lipomyelomeningocele was not a lipomyelomeningocele. That is a fatty mass/tissue that attaches to the spinal cord abnormally and tethers it by pulling on it from that location. However, hers was not fat or tissue. As they were getting close to it, they found it was not looking normal and it turns out - it wasn't.

Instead of fat or tissue, Kennedy had a bundle of dead nerves and nerve fibers all balled up which tethered to the cord and were pulling on it. Additionally, from the MRI, it looked like her cord was tethered to the low spot of the L3, well it turns out it was actually tethered all the way down to the L5. So, surgery was more intensive on that end. Dr. Fuchs had hoped to only remove one bone from her back, open a ligament, go in there and be able to do everything from that spot; however, he had to remove more bones, which were all replaced. Also, they attempted to stimulate the mass of nerves that were tethering her cord; however, they would not respond meaning that they were dead so they removed those as well.

Now for the good news, prior to surgery, they tested her nerve function in the spinal cord. It took a level 9 (I do not know the measurement type at this time) to stimulate her cord. After surgery, it took a level 6 so essentially, her nerve function was improved by surgery as it now takes less stimulation for her spinal cord to respond. Also (and this one made Nick smile a big old Pepsodent smile), because of the way he was able to replace the bones, there will now only be a very small gap (very small) between her bones of the spine so she is now no longer at risk for most contact sports. In essence, she can play everything but ice hockey, boxing, tackle football, and 2 others I can't remember but have no interest in her playing anyway. So it looks like soccer and basketball may be viable options now - wow! We were not expecting that one.

Because her surgery was more involved, she will be kept flat for 5 days to reduce the risk of a spinal fluid leak. While in surgery, they had to actually open the covering of the spinal cord (the dura) and the cord and fluid were exposed so we need that incision to heal. Dr. Fuchs said Kennedy's back will hurt so bad the first 2-3 days, she will likely not move much simply because it hurts to much. Additionally, the pain meds will help keep her sleepy. After that, we just try to keep her in her bed and as flat as possible. Eventually, they'll raise the head of her bed to see how she tolerates it and later PT will get her up to evaluate and monitor her.