Monday, October 28, 2013

Monday, October 28, 2013
Just so you know my posts for the next week will be unedited and lacking TD's touch, so bare with me!!  I will try to control my randomness!
Right now I am very happy I packed the Chamomile tea from the first hotel we stayed in.  I suppose from the weather changes, hotels and lack of sleep I have the beginnings of a cold.  The tea will hopefully sooth my throat and mind!
Speaking of hotels we will be packing up again tomorrow and will not be returning to a hotel unless Jacob is discharged before Monday.  The Ronald McDonald House is under renovations and full and the Hospitality House is full until at least Friday. We had hoped to get into the RMH so I didn't book a hotel past tonight and there are no hotels in the city because of a Pearl Jam concert here tomorrow.  Oh well!! Not the biggest worry.  It will be fun toting two back packs and two suit cases from our hotel to waiting to recovery to ICU.  I need the work out :)
It was good to see Dr. A today.  He was his bright and funny self.  I was worried how he was going to explain the surgery to Jacob and how Jacob would respond, but Jacob was calm and comfortable with Dr. A.  Jacob wasn't aware that he was going to have a lower lumbar drain for cerebral spinal fluid build up for a few days so Jacob had many questions about that. It is a used to keep pressure off the surgery site so it can heal and prevent CSF build up.  It is a precautionary method.  I had not explained in detail to Jacob how the surgery was preformed and where the incision would be and all the risks.  I wanted Jacob to hear it from his doctor and I'm pretty sure there isn't a 17 year old on the planet who wants to hear they could have a stroke, go into a coma or die during surgery.  Dr. A said tomorrow will be one of the biggest days of Jacob's life.  Jacob and I agree that it is a huge surgery, a life altering battle, but we like to think of the biggest as the best and in different terms than surgery.  I am thankful Dr. A is kind enough to acknowledge to Jacob how important he is, his life is and that tomorrow is a huge day for him as well. For a general idea of tomorrow Jacob has to be at pre op at 5:30 am.  That will be a chilling mile walk for more that one reason.  His surgery is scheduled at 7:00 am.  The surgery is averaged to take ten hours. The first 4 hours are spent opening Jacob up and delicately drilling away the bone behind the ear.  This will be done by Dr. Kesser, who we met today and like very much.  Dr. Kesser trained at House Ear in LA.  For those of you who aren't in the NF2 community, House is the leading NF2 clinic in the world and learning under Dr. Brackmann is significant.  It's good he's on our team.  Dr. Kesser will also assist in closing Jacob up, which I think will never happen because they use fat from the patient's abdomen to fill the area where the bone was removed and Jacob has NO fat.  They assured me they would find some, but I really don't know where.  This spot will have a drain as well.  Jacob's positioning was also a concern due to the lack of mobility in his neck due to his fusion all the way up to C2, but Dr. A has a plan for this as well.  The surgery is being done via the translabyrinthine approach.  After the opening (incision behind the ear slightly in the hair line then the ear is pinned forward) and drilling Dr. A will go to work on the tumor, or really tumors resection.  In NF2 it is never just one tumor that make up the acoustic neuroma mass.  Dr. A talked in great detail about facial nerve preservation and preservation of the lower cranial nerves which control speech and swallowing. He also warned Jacob that waking up with facial weakness is normal and usually goes away.  He said they tend to know before surgery is even over how the facial nerve will respond.  Jacob will be hooked up to monitors for all of the nerves.  Under the jaw, in the roof of his mouth...and I can't even remember where else.  There's so much that could go wrong, but I am not thinking about that.  There is so much that will go right! Dr. A told Jacob that his 3.3 cm tumor was at a good size where his chances of preservation is much better than after 3.5 and larger. So that's what I am hanging on to!! 
All of our day was spent in clinics and pre anesthesia.  We did hike to the post office to mail Gavin a post card from our hotel after walking home from the hospital and then another mile to eat.  Jacob has been a trooper putting about 6 miles on his legs total today.  It was an adventure.  We got lost going to the post office :) 
At home - TD and the kids made it through the day!  TD didn't get to work until after lunch today because he had to take Grissom to two different vets, x rays, exams, and medications.  He's suffering from narrowing trachea, anxiety, an upper respiratory infection and he's over weight.  He is at home now comfortable.  Hoping he will feel better soon.   Papa and Nana did awesome with G and Brie and Mitzi brought dinner to Buckingham, which  everyone enjoyed very much.  THANK YOU :)
I am off to pray, talk to my family at home and hopefully get Jacob to bed. 
I will update as much as I can tomorrow.  Thank you all for your love and prayers!! 


  1. Thank you for this update. So much to respond to but ... have to say I am struck by your physician's relationship with Jacob. Our pediatrician handles our 17 year old the same way and I will be forever grateful for the respect she is shown. Not all medical personnel do it that way! Sending many prayers today and over the week ahead.

  2. Be strong dear Jacob!! And take care of your self too.. You also need to be strong so that you can look over strong Jacob!!! Be strong guys!!!!! Been to House Ear Clinic in LA too and the surgery there for my AN. Yeah, you are right when referring to someone who expert in the field, and HEI are expert in NF2!!!!