Thursday, October 31, 2013

Jacob has had a great day! 

Most of you have seen his video and can see he's got some good movement on the right side of his face. 

Today he took two walks down the hall with a walker. The second stroll was tripple as far as the first. He does stop and close his eyes randomly to control the dizziness. Jacob had his lunch sitting up in a chair and is eating well. We've been released from PICU but since the Peds floor is full we are staying put. It's not a bad deal. We are in a private room with a beautiful view and on the floor schedule. That means no more neuro checks every hour and he's off the monitors. He's down to one IV and it's his port access. Wound care doctors came and looked at his bum. The spot of pain is a bruise. It responded well to pressure, turning white under the red means the cells under the skin are alive and a blister should not form. Dr. said it should feel better soon. Jacob continues to have 15 ccs of spinal fluid drained every 2 hours. He went most of the day pain free but has a bad headache now and is going to bed. He's been switched to oral pain meds. The dressing on his abdomen incision was changed and they kept the drain in. Jacob's been on the phone and in good spirits. Dr. A was happy with his progress. Oh & I love our nurse, lol. Sorry for the complaining this morning!

I had a nice quick lunch with lovely woman named Mary today from the UMC here and now Im hoping to get a nap. 

Happy Halloween everyone!! I hope you have a lot of fun tonight. 

Hi, my name is grumpy! 

Jacob's RN for the last 12 hours has been great to Jacob, but I'm ready for the nursing rotation this morning. It can't happen fast enough. I'm a fully aware that I am a pain in the butt, demanding you get it right parent and that you don't over baby and over medicate. I understand its annoying to constantly have to answer questions, but get over it. The lack of respect can be beyond frustrating to me. Don't insult me. I may not be on staff, but I know my son and I will not be ignored. Yes, lack of sleep intensifies these negative feelings. I am internally stewing and watching the clock for the shift change. My kindness is sweating bitterness and there maybe a snap drawing near! 

The little boy next to us is scared. He cries in pain and fear every few hours. Maybe he'd like a new nurse too. 

Ok vent over...

MRI with contrast done. Jacob went down at 5:30 am. I told then that Dr A was going to look at him first and then decide if today was the best day for the MRI but that didn't happen. I also told them that I wanted them to do it later because all of his doctors usually come around 6 am. But whatever. Jacob had his MRI with contrast and it's over. It was not fun as you can imagine but it's done and Jacob is happy that's behind him. Jacob did miss Dr Kesser's resident who came to remove the drain from the abdomen and change the dressing. They may leave it off for a while too. He's coming back after his first surgery so that will happen later today. Hoping with the drain out the incision will bother him less. It starting hurting last night. Neuro came in too and they will also come back later. We haven't see Dr A. I wish he would come in. Jacob looks better this morning. His facial weakness seems to have improved. I've asked the nurses to not give him any ativan until he sees Dr A. It makes Jacob so sleepy and non responsive. He only had it once yesterday. Jacob is still getting Zofran, antibiotics, steroid and pain medication, Fentanyl. Today PT is going to get Jacob up to walk. He needs to move around more. He's getting so stiff and he's in the "fear place" he gets into where he's scared move. Mind over matter!! 

Day 2 recovery underway. 

God grant me patience and flood my emotions with kind thoughts! 

Wednesday, October 30, 2013


Dr. A came in twice today.  Once this morning and once this afternoon.  He said that Jacob looked good several times.  I could tell he was disappointed that Jacob's facial functions was not as good as right after surgery this morning and this afternoon when he saw that it was continuing to digress he said they would continue to watch it.  He said more than once too that the lack of weakness right after surgery is a good indication that better function will return in a few months.  Jacob keeps telling me he is having a hard time because of the swelling, but the swelling doesn't look too bad this evening.  He was really tired when Dr. A came in this afternoon so I am hoping the exhaustion is contributing.  Only time will tell. Dr. A told me this morning the blood was ok in the spinal fluid line.  This evening he said he wanted to see that starting to clear up.  He spent a little while shaking the line to get the blood spots to flush through.  As of his last 15 cc drain, which happens every two hours, there is still blood. I keep reminding myself that his brain has been through a great trauma.  I should be praising the time I had with him today and not complaining about what isn't going by the text book!!  

I have been able to spend time with one of the pastors here from the UMC on campus, Rocky.  She is wonderful.  She said with me until Dr. A left me after he was done with surgery.  She prayed with me and came and visited Jacob and I today.  I wasn't sure sitting with a stranger on the most stressful day of my life would be good for me, but God, once again, knew better than me.  I am so happy she was there.  I look forward to keeping in touch with yet another beautiful person God has sent me! Thank you Jane!!

Jacob is up for an antibacterial birdbath soon by his nurse and in the morning he will have an MRI.  I thought Dr. A was kidding when he said they have a person who removes braces if they junk up the images, but they really do.  The nurse said they have to use them often for trauma patients.  Makes sense.  Hoping for one MRI and not having to take his dang braces off again!!

I will say that Jacob is dealing with a lot of very frustrating things, like confusion and dizziness, but his pain is mild when he is laying down and I am thankful for this!

I'm not sure what I am forgetting to report.  I am in a fog, I have spent the day by Jacob's side or dozing for five mins here and there.  We are moving right along.  As far as I know Jacob will stay in ICU one more night and we will go from there.  He is waking up now!! and he's hungry.  I love grilled midnight snacks!! And the Red Sox win the World Series!

 I will continue to praise God for his good works in Jacob and be thankful!!  I am also so thankful for all of you!! You are amazing and I am one lucky mama to have all of you loving us!!

Happy Halloween friends!! I will miss spending this fun night with my little doodle bug, but I know he is going to have the best time and that's what's important!!
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....

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!! 

Sunday, October 27, 2013

Jacob and I arrived safely in Charlottesville, VA yesterday. Today our close friends, the Carter- Lindquist family picked us up for lunch and took us out to see Thomas Jefferson's stunning mountain top home and gardens, the Monticello. It was beautiful. Later Jacob and I took a short walk on UVA campus. Jacob was thrilled to find a Mellow Mushroom for dinner and enjoy one of his favorite pass times, pepperoni pizza and football. I was super happy to see Peyton not only on the field but rocking out the yards second half. I know TD had an awesome day in fantasy football. Yesterday watching our Noles honor Bobby and continue our winning streak was rewarding to say the least. It was a good weekend in football and overall a good weekend for Jacob. 

Tomorrow Jacob will go to neuro clinic to see Dr. A, discuss surgery and have an exam first thing. Then we go to the walk in pre anesthesia clinic. That just sounds long. Last we will meet Dr. Kesser for the first time in his clinic. He is the ENT surgeon who will be assisting in Jacob's surgery.  

Jacob is in good spirits. He did wake me up this morning at 6:00 am screaming in a nightmare but he doesn't even remember. I couldn't even wake him up. I know he is worried and scared, but he is already being so brave and pretending like he's "fine."

I can't say enough times how much I appreciate everyone's prayers, love and support. I am beyond thankful and feel so blessed to have a strong Christian foundation loving Jacob!, our family and me. Through all of our NF2 trials and life's troubles I will still scream from the mountain tops, God is good and I believe He will keep Jacob safe and give us peace and understanding. 

I continue to pray for my daddy. We are still waiting for the results from his bone marrow biopsy. We need these back so we can make a plan and be on our way to getting him better!! 

It's very small in the big picture, but my Yorkie, Grissom is sick. He's struggling to breath since yesterday. We hope the vet will have the answers for us tomorrow. I love him so much. He's been my best friend for 8 years and I really need him to be ok. 

That's all for now. I will update after our appts tomorrow. 

Peace & Love!!

Friday, October 11, 2013

Surgery is approaching

A few things have changed since my last post.  I am thankful to report Jacob will be having his right vestibularschwannoma (acoustic neuroma brain tumor) removed at the University of Virginia with Dr. Ashok Asthagiri, Jacob's neurosurgeon from NIH on October 29, 2013. 


Jacob will be having CT and MRI scans on Wednesday, October 16 here in Tallahassee to determine the approach Dr. Asthagiri and Dr. Kesser will use for the resection.  We have not met Dr. Kesser, but he trained at House Ear, which is a leader in NF2 care. 


The University of Virginia has a neurofibromatosis (NF2) clinic which is lead by Dr. AsthagiriSince a vestibularschwannoma (acoustic neuroma brain tumor) resection in a patient with NF2 is significantly different from a standard acoustic neuroma resection performed in a patient without NF2, we wanted to take Jacob to a doctor highly experienced in NF2.  There is strong evidence that shows that tumors are more difficult to resect and that multiple nerves may actually be involved in patients with NF2 versus regular acoustic neuromas, therefore often causing worse outcomes like higher facial nerve palsy rates.  A neurosurgeon with specialist experience in NF2 is recommended in order to be able understand the manifestations found in an individual with NF2 and take these into consideration when operating in order to make surgery as safe as possible for the patient.


SoI ask for your continued prayers in our NF2 journey.  I ask for prayers of peace and understanding for Jacob as this surgery quickly approaches.  Jacob will lose his hearing in the right ear and could suffer from facial paralysis and balance loss.  There are many other risks, but these are the most common side effects to this surgery.  


If you want to read about the doctors please see the link below.


As always thank you for your support.  If you would like to help with play dates for Gavin, time with Brie or financial donations for our out-of-budget costs, please contact me.