Fri 12/13/13 - Pre-op for surgery

Friday the 13th.  First thought was that it was also Friday the 13th in 2010 when Breck had her worst seizure, before we even knew she had epilepsy.  She went in the hospital pretty much comatose on Friday, was sent to ICU and didn't fully wake up knowing who we were or where she was until Sunday.  That was a long, shocking, scary weekend.  Hers and our lives changed dramatically that day.

Now here we are - after 3 years to the place we have been working towards.  We recognize a power greater than ourselves at hand.  We are only the recipients of the blessings, and hopefully can continue to show our gratitude for them.

We arrived at St Joseph's Hospital in Phoenix (5th Ave & Thomas) at 12:30.  Right on time.  While waiting to sign in we saw Santa walking by.  He looked at us, smiled and said "Hi".  As he walked by - I looked at Breck and said "Wouldn't it be fun to just get a picture with him?"  Then we both got up and literally chased Santa down.  hee hee.  He was more than willing to share the camera with us.  What a great Santa face and it was fun to be a little silly when headed towards something so serious.

We actually were sent to the 2nd floor for the pre-op tests.  It was very casual and slow paced.  Here is Breck and I waiting for the testing to begin.

They had originally planned to do an EKG to check her heart.  But because that had been done during our last hospital stay she didn't have to have one again. 

They took labs --- You can see how much she likes this!  Her labs came back normal.  No surprise there

   

Along with completing lots of medical history paperwork we went ahead and set up an Advanced Directive or Medical Power of Attorney, just in case the unspeakable happened.  The good thing is that it is now done and available for any instances in the future.

Last thing needed was another MRI ---  

So now we are ready for surgery on Monday.  We were told to be at the hospital  at 7:30 am and head straight to the 2nd floor.  They even told her she didn't need to bring anything with her...not even her ID.  They had all the information they needed.  

See ya Monday!  Smiles

A Word from Breck - 5 days until surgery

I pulled up my blog today with the intention of printing an entry.

It wasn't long till I realized there was no music playing however; and unmuted my computer. The volume was so loud, Francesca Battistelli’s song, Strangely Dim, came blaring out of the speakers. “But when I fix my eyes on all that You are, Then every doubt I feel, Deep in my heart, Grows strangely dim…” There wasn't enough warning to stop the tears from blurring my eyes.

Lots of family and friends have been asking if they can see me after my surgery, now…five days away. And I've told everyone the same thing. I would love to see them but I don’t know how I’ll be afterwards and how long I’ll have to rest, but I do know I’m going to be completely fine.  I know it without a doubt. 

And when I cry, they’re not tears of fear. They’re tears of how overwhelmed I feel with how many people love me and care about me.  I just want to thank everyone once again for your prayers and love. 

This is the start of another chapter in my life.  And don’t worry…even without seizures, I’m sure it won’t be a boring one. ;)

Tues 12/10/13 - Surgery Confirmed for Dec 16, 2013

Amber from Dr. Kris Smith's office called to confirm Breck's surgery.  It had been fully approved by CRS.  Breck is to register at the hospital by 7:30am on Monday Dec 16, 2013.  Surgery is scheduled for 9:30am.  It is to be a 6 to 8 hour procedure followed up with recovery time in ICU.  I imagine that will be another 2 hours.  After that we will be able to see Breck.

I welcome the support at the hospital that day during surgery.  I have a feeling it will feel like a very long time... like waiting for a pot of water to boil.  I am hoping that we will receive updates as the surgery goes along, but Amber didn't know anything about that.

We will have to wait and see.  And underneath it all we have incredible peace that all is well.   Go figure?!  So thankful for the gospel and our faith in Jesus Christ - He who knows all and keeps us in the palm of His hand.

Smiles
Sean A'lee

Wed 12/04/13 - Dr Schusse update on neurologist

So as I was driving to California with my mom on our mom/daughter trip - I received a call from Dr. Schusse.  She stated that she had spoken with Jennifer at CRS and also to Breck's case worker.  She was told to put some more information together and write a letter as to why the continuity of care was so important to Breck at this time.

Dr. Schusse reassured me that Dr. Johnsen was a very good choice - that she knew of him personally, yet --- it would be best if Breck switched over a couple months AFTER surgery when she was more stable.  That the timing is very bad right now.  She was going to do all she could to try and get approved to see Breck a little longer.

Dr. Schusse also calmed my heart by saying that Breck really didn't need to have an office visit before surgery - that the office visit AFTER surgery would be more critical.

And - also to our relief - Dr. Schusse was able to send over prescriptions that Breck needed.  I was so worried as her refills had run out and she was almost out of meds with no way to see a neurologist!

So - all in all - the conversation was good.  I am constantly amazed at the goodness of these doctors who would go to bat for Breck while knowing full well that she would not STAY as their patient.

Smiles
Sean A'lee

Tues 12/3/13 Insurance Issues --- changing neurologists.

I received a call from Jennifer at CRS.  I was informed that CRS had denied approval for Breck to continue seeing her neurologist - Dr Schusse or Dr. Varma.  They have referred her to a Dr Stanley Johnsen at St Joseph's Hospital.  I was very frustrated.  Really?!  A week and a half away from surgery and we have to switch her neurologist.  This made no sense to me.

I called her surgeon - Dr Kris Smith.  They were not familiar with Dr. Johnsen but told me not to worry that the surgery would still go forward - they didn't need the neurologist in the room with them for this one.  They would have needed the neurologist if we were having the probes put in.  I still was not to comfortable with this.

Then I called Dr. Schusse and Dr Varma's office.  I explained what was going on.  The nurse relayed my concerns to Dr. Schusse and I was told they would get in contact with Jennifer at CRS and see what they could do.

I then tried to call Dr. Johnsen's office to even see if she could make an appointment.  The nurse said she would pass on the information.

I decided I had done all I could at this point and tried to let it go in God's hands... Praying that my mind would stay calm so that I could hear what to do next.

Smiles
Sean A'lee