Day of Surgery

I havent really had a chance to sit down and spend the time I have needed to update the blog.  This week has been solely focused on Noah's recovery and trying to be with Eli and Simon as much as possible.  It has been a very long, exhausting week for all of us, and we are starting to come out the other side.

We left for the surgery last Wednesday around 6am, and headed to UCSF medical center for Noah's surgery.  He actually came into our room at 4am, and wondered when it was time to go.  It was the first time in a while he had shown any anxiety about the surgery.  He crawled in our bed, and stayed with us until it was time to go.  I didn't want to get out of the bed.  I just wanted to stay there with him cuddled up next to us because I knew in some way his life was going to be different after the surgery, I just wasn't sure how.  But the thought of it had kept me awake for the 3 weeks prior since I found out he was going to have to do this.  In fact many nights, I would crawl into his bed after he had gone to sleep, just to breathe him in.  I just couldn't believe he was going to have to go through with this.  Meanwhile, he was super brave as usual, never once mentioning to me how afraid he was.  He sat through all of our meetings with doctors, had heard much of the possible side effects, and still never once flinched or said he didn't want the surgery.  He is a warrior.

6am finally arrived, and it was time to leave.  We loaded up the car, and headed out the door.  We were all anxious of course, and I wanted the car ride to be as slow as possible.  When we arrived at the hospital, they checked us in very quickly, and we headed to pre-op.  Things went as smoothly as they could.  Blood pressure check.  Fever, none.  Height and weight, check.  We met the operating nurse, the anesthesiologist, the resident, our neurosurgeon.  We signed papers which felt like signing our lives away, and by 8:30am it was time to take him in.  He was given the choice to have his port accessed first and put the medecine through there to fall asleep, or to get some gas and then they would access him.  He chose the gas, and I wondered how he would deal with that, since he was relatively comforatable getting his port accessed and then have the anasthesia administered through it.

They said one of us could be with him until he fell asleep, and he asked for me to go.  As we walked down the hall to the OR, he started crying.  He was so afraid.  It felt like the longest walk ever.  I wanted to just keep walking on out of there.  I just didn't know what the outcome would be.  He was so anxious, and it was all starting to come out.  We got to the OR, and he laid on the table.  They showed him the mask, and he started to freak out.  He was hysterical.  He didn't like the smell.  He didn't like the feeling.  He was stalling, and I was just fine with it.  The anesthesiologist cradled his head like a baby, assured him he was safe, and held the mask there until he went to sleep.  I stayed until he was totally asleep, and then walked out.  The clock began.  I was dreading this day.

The nurse escorted me down the hall, and I went to find Adam.  He was going to have an MRI before the surgery began, and then they would begin around 9am.  They said they would update us every few hours, so we went downstairs to get something to eat.  They called at 9 to tell us he was entering the OR, and would call with an update when the surgery began.  We didn't hear from them until 10:45am to let us know they were beginning.  Thats how long it takes to set up for this kind of surgery.  He was face down on a table because they enter the brain through the back of the head.  They must secure his head with some kind of apparatus.  In fact, when he came out of surgery he had 3 little holes, 2 near his forehead and one on the side.  These were pins they used to secure his head.

We didn't get another call until 12:30 to let us know they had reached the tumor and they were beginning the resection.  It takes almost 2 hours to reach that part of the brain.  Actually, once they separate out the muscles in the back of the neck, they retract the brain to the side, and can get a clear entry to the pineal region without cutting anything.  It is one of the most difficult areas to reach in the brain, as it is smack in the middle.  He told us it would take between 1.5- 4 hours to get the tumor depending how stuck it was to the varioius areas.  They called about 2 hours later to let us know everything was going well and they were still resecting the tumor.  By 3:30pm my patience was weaning and I wanted this to be over.  Thankfully, we had lots of friends and family there to pass the time, and at this point I was counting every second.  They called around 4:30, close to 4 hours after they began resecting the tumor, and told us they had removed the entire thing, and were preparing to close up.  We were so happy and relieved.  It was the first full breath I had taken all day.

It took about another 1.5 hours to close him up, and then he had a final MRI to make sure they got everything. The doctor came out to speak with us, and told us that the surgery went as well as it could, and he was quite pleased.  I told him I felt like kissing him.  He was pretty funny, and told me a handshake would be just fine, and I should kiss my husband.   Around 6:45 pm, he was out of the operating room, and in ICU, and within 30 minutes starting to stir and wake up.  He woke up around 7:15, and the first thing he said was, "will my body work the same?"  We were overcome with joy.  His brain was working just fine, though I realized we will need to help him psychologically for months to come.  He clearly wasn't sharing much of his fears, and they were real.

That evening went as well as one could expect.  He was so darling when he was waking up.  I think he must have felt so happy his brain was working just fine.  He was asking the nurse about everything he could, just as he usually does, and once again he could run all of the equipment had he needed to.  He was in quite a bit of pain as soon as the anasthesia wore off, but once they got the right dose of pain meds, he was ok.  He was extremely thirsty, and I kept feeding him ice chips, but he really couldn't hold anything down.  Ice chips, then throwing up.  More ice chips, more throw up.  He had a pretty rough night, but by the morning, he had stopped throwing up, and we he was able to hold down a little ginger ale.

His vision seems to be the only thing affected so far.  He has double vision, and at first he kind of looked like a deer in headlights.  In the ICU, he put on a patch rather quickly and kept reading us the time, down to the second, and I'm sure this was his way to make sure he could still see.  He was also calculating how many seconds and minutes until something else would happen, which was another way he was assuring himself that his brain was working just fine.  Which it was, and we were super thankful for.  So far, he is unable to look up.  He can look to the sides and in front of him, and is having trouble focusing, but all of this should improve with time.  Probably over the next 3-6 weeks he will have a marked improvement.  Swelling in the brain needs to go down, and his brain needs to recover from the trauma.