It is about 3am phoenix time on October 12th.  Greg is resting quietly for now and I have found sleeping impossible for myself so I thought I could write a really quick update since I will be mostly unavailable for the rest of today.

Greg had his surgery yesterday morning.  We had an early start getting up at 4am so that we could make it to the hospital around five to start all of his pre-op stuff.  Greg was doing his usual crack a joke routine, but he was getting scared and hadn’t slept the night before.  I will admit to having the “jitters” myself and I was very relieved to see that we had beat the morning  traffic and were able to get to the hospital with no problems.

Greg and I had from 5:30 to just before 9 to talk which was nice.  It was good to be able to sit next to him and at least try to calm his nerves.  The kids had recorded a couple messages that we got to watch on my phone then Greg sent a couple of knock knock jokes back to them.  Everyone in pre-op had a good laugh at Greg’s recent hair cut disaster.  He had gone to Great Clips last week to get his last hair cut before the surgery and to be funny he asked the hair stylist to make a bullseye on the back of his head.   I guess the hair stylist didn’t understand fully and although Greg had a feeling it wasn’t quite right he didn’t know until he got home and I showed him the results.  The lady decided to shave Greg’s hair 3” past where his hair line should be and then she shaved two small dots out one on top of the other on the left side of his head.  Since he was pretty numb on the right side he had no idea how bad it really was.  

Dr. Cronk, (Dr. Spetzler’s resident) came into our pre-op room and answered a few last questions.  She told us to expect about a six hour surgery and then told us that they were going to tape Greg’s because they don’t do many surgeries on this particular part of the brain stem.  She told us she would make a copy of the tape if we wanted.  I have mostly a voided watching any of the youtube videos that Greg has brought up, but I thought watching his after everything was done would be interesting.

The anesthesiologist came and got Greg at 9 and I was shipped off to the waiting room.  The next several hours were terrible.  They didn’t give me any updates other than a little pager that is preprogramed to say surgery in progress every couple of hours except for once about four hours in when it asked me to quickly go to the front desk to talk to the volunteer. I about threw up that time thinking of course something must have gone wrong.  However nothing had happened, the volunteer just wanted to know what I looked like.  I wish they would have started that page off with “ don’t worry everything is fine I just have a really stupid question!”  A little after 4 a secretary called and said that she thought that they were finishing up.  She however didn’t know anything about Greg or the surgery, at the end of that conversation I wasn’t even sure she was talking about Greg. 

Finally when I couldn’t take it one minute more Dr. Cronk came to the waiting room and said that Greg had just made it to recovery it was about 6pm.  She said that Greg did just fine and that she thought that they had gotten the whole mass out, but they would have to confirm that with an MRI.  She said that he couldn’t have made it any more difficult though.  She gave me great news that he was able to get extubated and that he was now breathing on his own.   She said that he was now much weaker on the right side then he had been and that he also now had a facial droop on the left side.  I think from just the sheer buildup of stress, anxiety and nerves I let a hand full of tears come out.  They were the first ones I had allowed since we had gotten Greg’s diagnosis.  Just then I got a phone call from the Iowa Dr. that had been helping, advising and encouraging Greg.  I hope that it now ok to call her a friend because I know that is how both Greg and I view her.  This Friend was responding to a text I had sent right before Dr. Conk had come in.  I was able to tell our friend the update even thought I was still a little tearful.  She was great and reminded me of things that I knew and educated me on several things that I didn’t.  Basically she told me that it was great news that Greg was breathing on his own and that all of these symptoms were to be expected and that they were nothing to worry about.  They would either resolve shortly or would be able to be worked on in time.  She reminded me that this wasn’t the time to be tearful and that I needed to be there for Greg.  Thank you, I know that you told me to stop saying that, but even friends need to tell each other how much they are appreciated.  I Very, Very much appreciate everything that you have done. 

I was left to wait in the waiting room for at least another half hour.  Although encouraged by the information from our friend my nerves were getting the best of me.  I hadn’t slept the last couple of nights before nor had I eaten anything that day and I think everything was catching up with me so I finally practically demanded to go to recovery to see Greg.  Luckily Dr. Conk saw me and said that she would take me, she told me that he had actually been asking for me.  I was relieved to see Greg and at the same time a little shocked to see the condition he was in.  I think I had prepared myself for a worse situation having seen patients in pretty bad situations before when I worked at the hospital in Iowa.  What I hadn’t really prepared for I guess is what my response would be to having the patient be my husband.  No I didn’t cry but I did immediately want to be able to comfort him.  He was in a lot of pain and couldn’t stop vomiting.  He was scared because he could now no longer feel his right side, he knew he was talking funny and he said that every time he opened his eyes everything appeared sideways or upside down and it made the nausea even worse. 

Greg is normally the clingier one of the two of us.  When I am sick or stressed out I just want space.  I handle things much better on my own.  Greg however normally needs some physical contact; he needs a hug or a hand to hold.  He wants to talk; he needs to hear the facts and he needs to hear that everything is ok.  He normally wants to joke or make some smart comment.  I started to gently do this and then saw the recovery nurse become upset.  She rightly did so.  You see Greg being a neuro -patient he needed to have very little stimuli at this time.  Little noise, little touch, little everything.  The nurse was scared I would become upset and ushered me out.  I became very upset with myself that I hadn’t remembered that Greg would need to recover differently this time.  We had talked about it quite a bit in the time leading up to the surgery and had agreed that until he was doing much better to keep everyone, but me out.  I had remembered that part, but I had let the why slip my mind. 

It was over a Half hour before I was able to join him again now in the ICU.  The nurses were doing their assessment on him.  I was encouraged that he answered all of the questions appropriately without needing anyone to lead or guide him to the right answer.  I was discouraged though that none of his personality was showing through at all.  I know that I shouldn’t have expected it, but for some reason I did expect that he would try to slip out a smart joke or say something a little off to get a laugh.  They tested Greg’s strength and although now weak on both sides he was at least able to move everything.  He continued to have very little to no sensation on his right side.  His facial droop was pretty significant made only worse by all of the swelling in his head and face.  He continued to be very painful and nauseated and became quite restless with everything.  I felt worthless I didn’t have anything that I could do to comfort him. 

Finally the nurses completed their assessment and began to get a clean gown on him and then prepared his pain and anti-nausea meds.  I sat in the corner and shot out a quick text update to our friends.  Knowing that I wouldn’t be allowed to keep my cell phone on I put my sister in charge of calling our families.  Again our Doctor friend called.  She had received the update and must have sensed that I was feeling overwhelmed and ill equipped for all of this.  She again reinforced that so far we had great news.  That everything he was exhibiting was to be expected and then proceeded to give me very helpful advice and encouragement.  She was the only person other than my dad that I talked to last night.  Honestly she is the only one that I would have wanted to hear from.  Without mincing words she told me the truth and gave me my marching orders which were exactly what I needed.

I spent the rest of the night repositioning Greg and holding his bucket.  Finally around 2 they were able to find a combination of drugs that gave him a little relief.  He now is sleeping on and off.  About every forty-five minutes he wakes up in pain and is nauseated so I get up and hold his bucket and change his bedding.  He has allowed me to swab out his mouth a bit and he feels like that helps a little.  I have been encouraged throughout the night that Greg’s voice seems a little stronger and that he is moving in bed a little better.  The nurse wants to see if she and I chair can get him up to the chair in a little bit so I will end this soon.  Greg is sleeping now so we are just waiting for him to stir again.  We told him our plan last time he was up and he was a little hesitant because of how dizzy and sick he gets every time he opens his eyes.  Unfortunately I think this is the only way to start making it better.  Things feel a little scary right now with his side effects, but I have come to understand it is because of all of the swelling on the brain.  We were told it could be initially much worse and that he should return to normal in time.

I am doing well, although I still haven’t slept or ate, I feel just fine.  I require almost no sleep under normal situations and under situations like this apparently I need none.  And after helping Greg with his bucket all night I have absolutely no appetite.

Greg will have speech therapy, occupational therapy and physical therapy at some point today as well as an MRI.  I know that Greg had wanted to work and work hard I hope that he will be able to push through and participate in everything.  I plan on making him anyways.  Please continue to pray.  My hope is that we can still stay with our original discharge plan which was to go home in three to four days.