Wednesday, October 30, 2013

Dear Blog and Caringbridge family,

Please forgive me for posting this here so late.  I tried to keep everyone up to speed on Facebook, but I realize I have neglected my other readers on LTML and Caringbridge.  I am exhausted so I am first going to just share my updates and then I will write a quick update for today.

Thank you all for your continued love and support through this journey.  Jacob, with God's protection still has so much work to do!! Bring on the healing!!

Tuesday October 29, 2013 Surgery Day

5:30 am Report to University of Virginia Hospital, Admissions

Taken back to pre op with in first 10 mins of arrival.  Met with various doctors, nurses and got Jac dressed in the fabulous surgical gown and hair net we've grown accustomed to. 
Dr. Kesser visited Jacob again and talked to him again about the side effects of having his hearing and balance nerves removed.  Jacob will be deaf in his right ear when he wakes up.  Jacob will suffer from dizziness, disorientation, nausea and balance complications until his brain adjusts to the balance nerve being gone on the right side.  After several days the dizziness should pass and after several months the balance issues should resolve some. Dr. Kesser briefly went over how the surgery will go...

Anesthesia will get Jacob comfortable.
Dr. Asthagiri will place the spinal fluid drain.
Jacob will be positioned for the long haul.
Dr. Kesser will drill away the bone behind the ear.
After opening, Dr. Kesser will work on peeling the tumor off the facial nerve.
Dr. A will take over and resect the rest of the tumor.
A fat graph will be done to obtain fat from Jacob's abdomen for packing and closing of the surgical opening.

8:07 am Jacob was taken to the OR.  Let the wait begin! Pray Pray Pray!!

At 10:30 am Sallie, surgery nursed called. Surgery is underway. Dr Kesser is "under the microscope" and has been drilling for about 30 mins. Only 3.5 hours to go of drilling and then Dr. A will start his work. No surprises. Jacob is doing well.   

12:20 pm check in. Dr. Kesser is still drilling the bone away to create the opening for Dr. A. Jacob is doing well and everything is going as planned.

2:30 pm Nancy, Dr A's nurse came & saw us. She isn't surgical but said she spoke with the OR and Jacob was good and they were still drilling. Then at 2:50 one of the neuro doctors called and said they are switching teams. Hoping Kesser come down soon. Dr A is now working on removing the VS tumor. This will also take many hours. Thank you all for your love and support.

4:40 pm Dr Kesser came down and said Jacob is doing well. He said he spent some time peeling the tumor off Jacob's facial nerve. He said J's facial nerve is responding well. They aren't near the other nerves yet. He said the VS is very large and it will be many more hours. Dr Kesser was smiling so that was comforting.

7:14 pm Jacob is still in surgery. Nurse says the doctors are working away and in good moods.

14 hours and counting since Jacob went to OR. Will be several more hours before the second stage of this battle begins. I put on my "Everything Has Beauty" shirt today to remind me to find beauty in this day. Riding the metro from NIH to the DC Airport, renting a car, driving to Charlottesville, visiting with us then driving back to DC and back to the metro. That's dedication!!
These amazing ladies have strengthened me & kept my spirits up! I love them & forever grateful. CaseyAli &Laura thank you!!

7:30 pm Update just now. Still working on Tumor resection. They still have to do a fat graph and pack and close skull opening and then close after they finish removing the tumor. 
Please don't stop praying!! There's still so much to be done!!

9:00 pm update still working on tumor. Still have to do fat graph, packing closure. Nurse said roughly 2 more hours from now.

11:00 pm Just spoke with OR Nurse and they have started the fat graft and will then pack & do close. I'm headed up to floor 6 at neuro to wait for Dr. A. Nurse said it will be at least an hour. I'm ready!

11:45 pm, almost 16 hours after Jacob was taken to the OR he is done and has endured a 15 hour surgery. Facial nerve did respond to lowest stimulation. He isn't awake yet. I haven't seen him. They couldn't get much fat from his abdomen so they didn't have a lot to pack the opening with. Will need to have the drain longer for healing with less fat. Next 24 hours will be watching for CSF leaks, stroke, brain bleed. Lower cranial nerves not involved and VS easily pealed away from brain stem. Jacob's hearing and balance nerve were removed. He will be deaf on right side and have to relearn his balance. 
2-5% of the tumor was left. 

As I was typing this Dr A just came in and said his face looks good! Praise God!!! His still has his precious smile!  I can't wait to see him!!

I have no words to express my graffiti the for the love and support I received today from all the messages, texts and calls. I am beyond blessed to have such an amazing support system. 

I realize I am so tired I misspelled gratitude so bad in my first sentence that my AC thought it was a completely different word. I'm leaving it because it's funny

Casey Carter is making the long drive home tonight. May she be safe. Thank you for once again enduring a terrifying surgery wait with me. I love you!

Wednesday, October 30, 2013 Post Op 

8:00 am Jacob's night (or really last few hours) in picu was rough. Jacob was vomiting blood. His spinal fluid drain is filled with blood, which they said happens sometimes, is normal and they are watching it. It's hard for me to look at though. His nose has been bleeding. He's very confused and moaned most of the night. His butt  is causing him a lot of pain from a pressure bruise, bed sore or pressure ulcer to be. I have not seen the right side of his face move very much. He is mumbling because it isn't moving well, his mouth is dry and everything is swollen from 15 hours of intubation and needle sensor probes. Jacob swears there is something in his mouth and I keep telling him there is not. He can not smile very big for me, but he does have motion and his face is not drooping. I'm hoping it is just from swelling. Dr A's "good" must be different than what I expected. Jacob's blood pressure has been high so his monitor went off for many hours. He's on antibiotics and a steroid. They took him for a CT and brought him back. Waiting on that to be read so he can have liquids. I've had maybe an half hour of sleep so forgive me for being unpleasant. I didn't expect this to be easy, but still had hoped. They just came in and changed the dressing on the fat graft and drain in his belly. It is going to be a huge scar across his stomach. Please pray for swift healing for Jacob!! It is starting off rough and he is so dizzy. He feels like the walls are moving, the tv is up side down and he doesn't feel like he's laying down. He keeps asking me where I am and holding his hands up to "stop the room". He asked me if he was in a box. They warned us the removal of the balance nerve would cause this. I know tomorrow will be better than today but it feels distressing right now.
Dr. Kesser came in while I was posting and said Jacob's facial movement was better right after surgery and said the change is most likely due to swelling. Hoping to see Dr. A soon.
Please continue to lift Jacob in prayer. His little body has a lot of work to do and needs God's help!

10:00 pm Wow Today has been a long day of ups and downs.  I am filled with very random thoughts so bare with me!  I will start with the last few hours...they have been pleasant in comparison to earlier. The good moments! Jacob is peacefully sleeping right now and has been for a while.  I should be sleeping too, but I can not.  I did get an awesome nap in for 90 mins at around 4:00 pm today.  Finally!!  Our best moment of the day was our dinner at 5 pm.  It was the first meal Jacob ate. Chicken fingers, chips and a banana, so Jacob.  We listened to country music with ESPN muted in the back ground.  Jacob and I sang along with the music to practice him using his facial muscles.  I enjoyed making funny faces with him.  Around noon today Jacob had ice cream and felt up to calling a few family members.  He was happy about that! 

We saw Dr. Kesser early this morning and he wanted Jacob to get up and sit in a chair today.  Physical therapy came in around 1:00 pm and we got Jacob into a chair only taking one or two steps.  I am very upset that of all the painful things Jacob could be feeling the most painful part is on his butt area where he is bruised from positioning.  Jacob sat for about an hour in the chair and he even said the spinning stopped for a few minutes, but then he complained that everything in sight was bouncing.  He has spent a lot of the day with his eyes closed.  Dr. Kesser said his brain will adjust the more he has his eyes open but wanted Jacob to close them whenever he felt like he needed to.  Jacob hallucinated most of the morning, saw double, talked about the walls coming in, his nurse riding a wave, the curtains changing colors and had bazaar conversations with himself.  We know this is due to the surgery and not the drugs because this is the first time he has gone through this and this is surgery #13.  We saw Dr. A twice.... to be continued.  I have to find the plug to my laptop....

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