I am here in the Neuro Intensive care unit with Sarah.  She had a really rough night.  Her brain experienced a lot of trauma during the surgery.  Between that and the meds and just everything that has been going on the doctor thinks it caused some post operation psychosis.  She was really confused and disoriented and having some very vivid thoughts and dreams that she thought were really happening.  It is hard and sad to see her like this but I have to remind myself that it is hopefully just very temporary. There was one nurse that she really clicked with who was able to help keep her calm from time to time.  I was grateful that her sister stayed with her for a while so I could go home to spend some time with the kids and get them in bed.  It was good to reassure them that their mom was okay.

This morning things have gotten a little better for her.  She is still kind of delusional and confused but at the same time very alert and aware of what's going on around her.  She is experiencing a lot of pain and discomfort and some bad double vision which the doctor said would happen.  She is talking a lot though a good part of it is gibberish but as a man I am good at zoning all that out anyway :)  She has said some funny stuff that made me laugh but she's totally serious.  I'm just glad she's able to communicate.

She was able to get up and walk down the hall with me and 2 physical therapists holding her.  They were impressed that she did so well.    She just got all cleaned up and got new clothes and sheets and teeth brushed thanks  to our sweet El Salvadorian CNA named Rosa.  I watched as she did all this and was pretty touched that a total stranger would have so much compassion for my wife.  I don't think I could do that for a complete stranger.  These nurses and caregivers seriously have a special gift of caring for people.


Back to the surgery a bit...So yesterday at about 5:00 pm our neurosurgeon Dr. Jensen came out to the waiting room to find me.   I could tell by the smile on his face that things went well. He said he had just finished and that Sarah came to very quickly after he was done.  She gave him 2 thumbs up, wiggled her toes, smiled and tried to pull off her oxygen mask.   He took us into a room and talked about what he had done.  They made an incision about 5" long from the base of the skull down to the lower neck.  They cut into the skull, a hole about the size of a racquetball maybe.  They had to separate the 2 hemispheres of the brain to get right into the center where the tumor was sitting basically on top of the brain stem.  He said that after getting in there and looking closer, he discovered that it wasn't necessarily a tumor per say but rather a "cavernous malformation" as he put it.  From my understanding it started out, maybe at or before birth even, as abnormally formed blood vessels that enlarged slowly  after repeated small hemorrhages possibly throughout Sarah's life.  It eventually formed a large mass.  This one happened to be sitting right on top of the brain stem, in a very hard and tricky place to get to.  He said he really had to work at it to get it out, and in lots of little pieces.  He had to be extremely careful in the process to not damage the spinal cord. Due to the bleeding over the years it had stained the surrounding brain making it really hard to see exactly where the mass was and wasn't.  He was confident that he gotten most of it out and was also optimistic that it wasn't malignant but can't say for sure until the biopsy comes back later this week.  Overall his feeling was that the surgery went better than we had all hoped for.  We are so glad.

After reading a bit on google we found that it is common for people with a cavernous malformation to be mis diagnosed as having Multiple Sclerosis.  This is interesting as many of Sarah's symptoms over the last months and even the last year have been parallel to MS symptoms.

I know this was just a day in the life for him but for me and my family and for Sarah's, this was an extremely stressful, scary and hopefully once in a lifetime experience.  I'm so grateful that Dr. Jensen and his team possess the amazing talent and ability to do what they did for Sarah.   To say that we are relieved would be an understatement.

I wish it was all over an we could go home and back to our normal life now but it's looking like we will have some tough challenges ahead in her recovery.  Maybe for a few weeks only, maybe months, maybe longer.  She is strong and determined but for today she is  struggling to make sense of reality and is in a lot of discomfort.  They moved her out of ICU and into Acute Neuro Care an hour ago and after eating some lunch she is finally drifting off to sleep.

I know many friends and family would love to see her but for the time being I think she really just needs some peace and quiet.  Commotion seems to stress her out and she's having a  hard time interpreting peoples good intentions.  She really struggles to talk, feels a little claustrophobic and is experiencing some delusion....from best I can tell by observing her that is.  Please know that we appreciate all your thoughts and prayers so much and look forward to visiting as her condition improves, hopefully very soon.

We will keep you posted.  Thanks.

Also, for any health care professionals reading this, please excuse my poor attempt to convey my own interpretation of what the doctors and nurses are telling me.  I'm doing my best to take it all in but sometimes I just wing it.