Tethered Cord Surgery- October 21, 2010

Wow..It's been almost 2 years since I last posted...but I hope you will follow as I update you. Life has been busy...real busy. (Having 2 toddlers is no joke). In my last post, I left off with Harrison having been listed for his liver transplant and was waiting for his tethered cord surgery. My mom and I were very nervous about this surgery given that Harrison's state of well being was not good. Even the neurosurgeon questioned whether or not it was ok, but his team gave us the go. So on October 21st, we arrived at the hospital for his tethered cord release surgery.

I'll never really forget this day or drive up to surgery. We had to be at the hospital at 6am for surgery. So we were up real early and on the drive in, I clearly remember Harrison being unusually happy. He didn't stop jabbering and saying "dada" one of the few "almost" words he had just started to utter. I remember thinking how sad that his daddy couldn't be in the car with us to hear him so happy and content.(His daddy was staying to take his sister to school.) The nerves of this surgery were high on my part. I really just wanted to pick him back up and take him back home. I snapped this picture of him because it captured just how happy he was. Little did I know that this would be the last picture I had of him smiling for a long time. Little did I know that this surgery was only the beginning of major life changes to come. The tethered cord surgery, in simple terms, involved going in to release the tension at the base of the spine that contains nerves that affect, bladder, bowel, and lower body movement. Releasing this would help prevent damage to these nerves that can occur over time if not released. During the release, doctors would test his nerve response to the areas affected by the tethering to see if they got responses and how strong they were. The expected recovery for this surgery was 3 days and up to a week. We expected a week considering Harrison's condition. So surgery took place that morning and it went well with no complications. We were told he got good responses in all his nerve areas except for one side of his anal rectal area. They weren't sure if that was due to damage or if it just wasn't responding yet. And only time would tell what affect it might have on his bowel control. On we went to recovery. Harrison was on Morphine and restricted to no movement for the first 24 hours after surgery. All seemed ok until that evening when we noticed a lot of drainage from his incision site. We kept calling the nurses and telling them. He also seemed really uncomfortable. So during all this we quickly learned that Harrison had a Cerebral Spinal Fluid (CSF) leak. It would stop and start, and every time he cried it would pour out. During these episodes, he leaked enough CSF to soak through 3 sets of bedding and bandages layered on thicker than my hand. We (me, my husband, and a nurse) spent an hour holding pressure to his back as we waited for an on call neurosurgeon to arrive. There is great danger in losing lots of CSF as it also is what surrounds the brain to protect it. I expressed this concern numerous times but it fell on deaf ears. We battled this all night and into the morning. The next day doctors decided to do what they call an oversew of the suture site. So instead of using glue to close the incision, they would use sutures and literally sew the two sides of the skin slightly over the other which we hoped would not allow any more fluid to leak. At this point, doctors didn't know if this would work to stop the leak and they also didn't know if there were other reasons such as hydrocephalus or enlarged ventricles causing the CSF leak. The doctors did the oversew and the leaking seemed to slow some, but after a while it started again. It wasn't as much as before, but it was still too much. He also seemed to be in considerable discomfort so he couldn't come off the morphine.The doctors decided he would need to go into surgery and have a lumbar drain put in the next day. Well overnight, the leaking seemed to slow and we all decided to hold off on the surgery and we even began his feeds. Things were finally looking up. Yet Again all was well until later the CSF leak started again. So the surgery for the drain was rescheduled. Being a weekend, this meant the surgery was done by a resident. After the drain was put in, Harrison came out to recovery. His recovery took a sudden turn for the worse. We noticed that there was blood coming out of his g-tube. So immediately there was concern that he was having a GI bleed due to his failing liver. Labs were drawn, xrays taken and it was determined that Harrison needed a blood transfusion. We had also noticed that his urine was the color of tea. All of these were signs that his liver was going south. In addition, the lumbar drain meant an additional 5 days to his recovery. We had been hearing buzz that there might be a liver for Harrison coming soon and were praying that this hiccup in his surgery would not make him miss out if a new liver was to come available. He was now, after his most recent labs, at the top of the list for transplant. After such a grueling weekend, we finally got to meet with Harrison's neurosurgeon who had ordered a CT scan of his brain. The CT scan showed that he lost too much CSF and had caused some bleeding on the brain, and his dr was not a happy person with how his situation was handled. Harrison also was ordered very little pain relief meds after the drain and this finding meant he was having spinal headaches. This explained why he would cry and moan in his sleep. It was absolutely heartbreaking.

So 4 days after the initial tethered cord surgery, we had battled a CSF leak, and other complications due to his failing liver. The neurosurgeon informed us that due to Harrison's poor liver condition that his body was extremely slow at healing and the lining around the spinal column was extremely thin. Therefore it was difficult for him to sew it closed during surgery and he felt it was probably the cause of the leak and the drain would help as his body slowly tried to heal itself. The following day, five days after the surgery, we were told that there was a chance Harrison would receive a new liver before he even came home from the hospital. I didn't know what to think or believe. It wasn't officially being said, probably because it couldn't be, but all I knew was I could only take it one day at a time.