Sunday, January 12, 2014

An Update on Jon...

It's been a little while since I've posted a medical update on here.
It's all very hard to communicate.  But I'm going to do my best to get you up to speed on 5 things that have happened... (I'll start with a re-cap of the past few weeks and then fill you in on our latest Dr appointment..)

1) Jon "graduated" from his therapies!  (physical, occupation and speech)  Congratulations to our handsome grad!  We are proud of all the hard work you put in, Jon!!!  :)

2) As previously stated in other posts, we've had quite a few referrals get denied by our insurance company.  Most of the specialists our neurosurgeon wants Jon to see are at UCI and our insurance co won't approve it.  One of those was a neuro-opthemologist - who could perform the surgery on Jon's eye.  (putting a gold weight on his eyelid so he can close it)  Our insurance co said they have a Dr in our network that we can see instead of going to UCI.  So we went and saw him.  Well, the Dr appt was pretty horrible.  Our time there can be summed up with sharing one of the gems that happened: His cell rang.  He had Jon in the chair, fitting him for the gold weight.  He answered his phone(!) and we said, "Hey man.  What's up?  Ya, I'm still stuck here. I got 2 more patients and I should be able to jet outta here in about 45 minutes.  Ya, I know.  Ok, well let's meet for drinks.  Ya Elephant Bar at 7:30 sounds good.  Drinks are long overdue."  I mean, come on.  This was after he told us he doesn't get paid enough to do this procedure. And before he reminded us that he's the only one in our network that does this type of procedure, so we have to use him.  We went home feeling uneasy about moving forward.  But we didn't have a choice.  Jon needs the surgery.  Then Jon went and researched this Dr online and found that he has horrible reviews.  Yes, bad bedside manner like we experienced, but also bad work that resulted in patients having further eye damage!  We decided to call off the surgery.

3) Jon's eye began to feel better.  From around Dec. 27-January 6, Jon's eye felt really good.  We knew canceling the surgery was a good choice.  We decided maybe we could just wait until we know for sure whether his facial paralysis would restore or not, before doing any surgeries.  (we were only having this surgery done early, because of the pain.  But w/o the pain, there was no need to have surgery early!)

4) January 6, Jon's eye pain returned.  :(  I called our insurance company to appeal their denial of the specialist at UCI.  They are currently reviewing our complaint and request.  Would you please pray with us that they would approve our request and re-consider sending us to a better specialist?

5) January 9, Jon had an appointment with a new neurologist.  This was supposed to be a HUGE appointment for Jon.  This Dr was supposed to perform a very special test (EMG) on Jon to determine if there is any life left in his facial nerve.  We were nervous to know this information, but were hopeful for good news.  This Dr is the President of the Department of Neurology for the State of California. We were thrilled to be in good hands.  However, the appointment did not go as expected.  He refused to do the test on Jon.  He said although Jon's ENT requested this test be done, the reality is the test is very rare. (to be done on a facial nerve)  And it is very painful.  He said he in no way would feel comfortable and confident doing this test.  He asked Jon about some of the therapies he had done for the past few months.  He then asked if he had seen any facial movement at all during any of it.  (especially in the e-stim therapy, where they shock his face) Jon told him he never had any movement.  The Dr then said the most gut-wrenching, devastating words:  "Because you've had no response to any therapies this far, it indicates to me that your facial nerve is dead.  It indicates there is no life left in the nerve."  He then went on to say that Jon needs the "best of the best" care.  He said Jon needs to see an academic that specializes in brain tumor post-operative care.  He said he will fight to make that happen.  He said he will settle for nothing less than the Chair of the Dept of Neurosurgery at USC.  (Dr. Steven Gianatta...anyone know him??)  ;)   He said the other place that would be good, would be to go to the House Clinic in LA.  But he said that would most likely be cash out of pocket.  He said USC is the best and he will fight our insurance company with us to get Jon the best.  (He kept saying the words "fight" and "best."  I wanted to do a standing ovation!)  He said all of the regular community doctors and specialists are great for 90% of what most people need. But he said what Jon needs now, is a higher level of care.  Specialized.  Academic.  It's Jon's face.  His face.  "You don't want to settle," he said.

The door had barely closed behind us as we walked out of his office, and Jon and I were both very emotional.  But surprisingly for different reasons.  I was emotional because I felt like Jon FINALLY had an advocate.  Jon finally had someone who was saying they would fight for him.  Fight for the best care for him.  They realized how important this was.  Jon however, was in tears for a different reason.  He was devastated.  Sad.  Mad.  Frustrated.  The words, "This indicates to me that your facial nerve is dead," was on repeat in his head.  We went to lunch afterward to talk and process.  There were more tears.  "What if he's right?  I just don't know how I can do this for the rest of my life." He said while pointing to his face.  My heart broke.  I mean, shattered.  "But babe," I said.  "He's gonna fight for you!  We are going to get you the best care!" Jon looked at me, unimpressed.  "When you take your car to the auto shop, you want them to look at the problem and say, 'Oh this is easy to fix.  You can get the part at any ol auto supply shop down the road.'  You do not want them to say, 'This is actually a really big deal.  And you need a really special part.  I have to ship your car to Germany to get it fixed.'  You just want it to be an easy fix."  My heart broke for him again.  The reality is, on October 1st, we wanted Jon's headache to just be a headache.  But it wasn't.  It was a brain tumor.  We are already in Germany.  We have been for 3 months.  It took one second to get there, and now the trip back home is a long one, with lots of stops and detours.

*Would you pray with us that the doctor's "indicator" was inaccurate?  Would you pray that Jon does have life in his nerve?  The nerve can restore up until 6 months, and sometimes (although rarely) can restore up to a year post-op.  We are about 3 1/2 months in.  There is still hope!
*Would you pray that Jon does get approval to see the neuro-opthemologist at UCI?  That we would find favor in the eyes of those reviewing our appeal?
*Would you pray that we would get approved to be seen at USC?
*Would you pray for Jon's heart?  That fear and worry would not have room to settle in his heart?
*Would you pray for me as I love and encourage Jon?

Thank you.  This is a roller coaster of a journey.  Thank you for bearing with us on this ride; covering us with your love and prayers.  We are grateful for you.


  1. So sad to hear this update :( I am and will continue to pray that God will fully heal and restore Jon's facial nerves. I don't know that specific MD at USC, but I agree that they are the best and that's what we all want for Jon. I'll be praying that your appeal to see the surgeon at UCI will go through soon. Love you both!

  2. Oh, dear Deanna, this hurts my heart. Discouragement is the number one tool of our enemy and he has wielded it against us many times over the last five years. DO NOT pin your highs and lows on the comments that a doctor or two (or 10) can make. On Nov 9, 2008 I was told that my husband would never walk again and would possibly never breathe on his own after surgery to repair his broken neck. Talk about neurological damage! His C-6 was/is shattered! His spinal cord, though not severed, was like a stretched and frayed rope. Every step of the way we have dealt with doctors spouting statistics... most quadriplegics get ALL the returns (recovery of various functions) within one year of injury... don't expect much after that... nothing after two years. Well, OUR GOD IS BIGGER THAN THAT!! Not only is he breathing on his own, walking more than we could have ever imagined but he's STILL having returns that we didn't think possible!
    I don't want to paint a rosy picture and say everything is rainbows and unicorns... it's not. Life is harder than it was five years ago. No question. But Jehovah Jireh, the God Who Heals, is still on the throne! HE is the One Who holds Jon and you and Jackson and Taylor and Morgan and Reese in the palm of His mighty hand. He has the final say. Not the doctors, who, though possibly brilliant, don't even have a complete set of blueprints of God's intricate and magnificent design!
    Let us not lose heart in doing good, for in due time we will reap if we do not grow weary. Galatians 6:9
    Praying on...

    1. Wow, thank you for sharing your story and thank you for your words of encouragement...

  3. I don't know you personally, but I want you to know, my wife Ellen and I will keep you both in prayer. I'm especially touched by Jon's emotional pain. I ask that our Father in Heaven would fill him with joy and courage once again.

    Please let Jon know he truly is a warrior, and God is not done with him yet.

    Jason B

  4. I'm not saying this will be a miracle answer but try giving him sublingual B12, make sure it is methylated, methylcobalomin is important for our nerves. Anesthesia can reduce our reserves as can age. It is a water soluble vitamin so taking 5000mcg will not do ham, especially since we absorb so little. There has been university research in Japan with diabetic patients given large doses of this who saw improvement of their neuropathy. I myself had numbness of my toes from being deficient and after a few months of supplementing it is no longer an issue. It might not be a bad thing to at least try to see if it helps him. There are several good brands, just try to find a sublingual that is methylated, some people benefit much more from this form than injections (me included).