Today was the day. Surgery was scheduled for 8am and we had an enormous amount of anxiety leading up to it. Last night, around 8pm the surgeon came to evaluate him and discovered his mobility had seriously declined since we came to the hospital on Friday. He was unsteady on his feet, and not confident to walk even 3 feet without holding onto something. It was evident that the pressure on his cord was growing and that the surgery was needed sooner than later. Because of the decline, the doctor thinks that he will need inpatient physical therapy for a few weeks, but we won't know for a few days.
Adam slept at the hospital last night, and I came back this morning around 7am. Noah was screaming at us that he wanted food and was
blaming me that he was here and couldn't eat. He was terrified of being put to sleep. Over the weekend I think he came to terms with the fact that he needed to be here, but he was still quite angry and frustrated. He kept asking us why they couldn't just give him a pill to get rid of it, and it was our fault he was here.
When they came to get him to go to pre-op his stalling techniques came out in full force. Questions, stretching, needing to go
to the bathroom.....the list went on and on. Eventually we made it to preop, and we met the nurses, the anesthesiologist, and waited for the surgeon. He was absolutely hysterical. I could not understand why they couldn't administer medication sooner to calm him down. I was grateful for the child social worker they had with us, and my dad and brother kept him entertained with stories about how I used to torture my brother, and never get in trouble. Which of course was not the case.
Eventually they got him to get on the gurney and administered versed. He got fairly dizzy, calmed
down, and they took him in. Then the countdown began. We were told the surgery would be around 8 hours, but that if it went longer it didn't mean something was wrong. I have been most concerned about today. My fears were that he would be impaired long term because of the cord, and lose mobility and or his walking ability. Furthermore, I really didn't like the idea that he would be under anesthesia for so long, but I knew there was no choice. We were updated every two hours by the nurse, and were told each time that things were going as planned. He really did not come out of surgery until about 7 PM. The entire ordeal took about 10 hours.
At the start of the day I didn't know how I was going to make it through the entire day. We are so fortunate to have such supportive friends and family who sat with us, laughed, told stories, and cried. We received messages all day from concerned friends and family members, and we feel grateful for everyone.
The surgeon reported to us that everything went well, and that his muscles responded better to testing after they removed some of the tumor, which was a win. They were not able to remove all of the tumor because it is wrapped around the cord with many tentacles. The goal today was to relieve pressure and get a diagnosis, and we will have one within the week. The cells are malignant, which was pretty much expected, but we were given a good amount of hope that they will be very treatable with chemo. First we need to know what kind of cancer we are dealing with.
When he woke up, he was angry and yelling at me for water. I was happy to be screamed at and thankful that his feisty, relentless personality was there. He will need it in the coming months.
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