Friday, December 13, 2013

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

Wednesday, December 11, 2013

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. ;)

Tuesday, December 10, 2013

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

Wednesday, December 4, 2013

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

Tuesday, December 3, 2013

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


Monday, November 25, 2013

Mon 11/24/13 - Things in Common

Mon 11/24/13 - Things in Common

Last week I stumbled across a blog about Annie.  A young girl who went in for the same surgery that Breck is scheduled to have Dec 16, 2013.  I was amazed at how much Breck and Annie had in common with the onset of their epilepsy.  Annie is younger than Breck and had her surgery 1 year ago.  Today she is seizure free.  She still has some hurdles to overcome and work on - but overall is doing well.

You can read about Annie's surgery here at:  http://sevenredheads.blogspot.com/2012/11/amygdalohippocampectomy.html

I was able to speak to Annie's mom Tiffany last night on the phone.  What a blessing to hear of someone else's experience and gather advice on what to expect during surgery and recovery.  Now Annie ended up having more of the brain removed than expected.  She had some of her temporal lobe removed along with the hippocampus and amygdala.  Therefore her issues from recovery could be different and harder than Breck will go thru.  That being said -  Here are some things I learned from Tiffany:

1.  Video Breck reading out loud, telling a story,  joke and even doing some sign language.  This may prove very useful in her recovery - to know where she was at before surgery.  Tiffany wished she had done this with Annie.  Annie has had therapy weekly to help regain some of these skills.

2.  This is Survivable.  With all that Tiffany said - the last thing she told me was that even tho it is hard - we can get thru it. Tiffany really stressed taking care of myself as well as Breck.  Sometimes us Mom's get wrapped up and when it is over - we don't know what to do with ourselves.  Too used to worry.  She said to not rule out counseling if needed.

3.  Personality remained the same.  This was a relief to me.  Tiffany said if anything Annie is a happier child.  She didn't experience a negative change.

4.  Some of the trials after surgery were -
Not being able to speak for a few days.  Annie tried to use sign language to communicate.

Not being able to handle more than 1 visitor at a time.  Her brain was too overloaded.  Annie loved getting cards and notes in the mail.  This is how people were able to stay connected to her while she couldn't handle visitors. 

Listening to people speaking sounded like the school teacher from Charlie Brown (Whaa Waa Wahh Wa)

Double vision that lasted at least two months.

Not able to handle loud noise or music.  Even the church organ was a problem.  Annie needed to leave the room during the hymns.  Annie often took earplugs to school to use if the noise was just too much.

School work was impossible.  Tiffany suggested that we talk with Breck's college about her scholarship to see if we can put it on hold if needed.  Annie is just now able to stay up with school work.

Short-term memory is a real issue and slow to return.  Annie is learning new skills to compensate for that.  In the early months after surgery, Annie would read a line out of a book and not remember what she read after reading the next line.  I am hoping that Breck's WADA test results are correct and that won't be an issue for her.

What is interesting are the thoughts that had come to my mind even before finding out about Annie:

John and I had discussed keeping a close eye on what tv / movies we watch and playing soothing / soft music.  With the brain healing we want to be careful about what is focused on.

We also discussed how important it will be to have a calm / peaceful atmosphere in our home.  Not so much coming and going.

Staying positive is very important.  Breck and I already had discussed creating a place in our home to post "gratitude" notes up on the wall to help on something good in every day.

Even with all this we understand that Breck's experience could be very different - especially if the hippocampus and amygdala are the only parts removed.  How very grateful I am to hear and read of Annie's experience.  I hope we will be able to meet this amazing young girl and mother before Breck's surgery.  I feel like we can be more prepared and ready for whatever happens.

Blessing through others.  I look forward to when we will be on the giving side and be able to help others.

Smiles
Sean A'lee

Thursday, November 21, 2013

My (Breck’s) Journal Entry: Nov 17, 2013

My (Breck’s) Journal Entry: Nov 17, 2013

Yes, it’s long and one doesn’t have to read it if they don’t want to, but I just thought I’d include a journal entry I wrote the day my fear left me concerning my surgery coming up. I know God will take care of me. -Breck
I have not been to my ward in church in the past three weeks. This last month has been crazy. I was in the hospital due to some complications with a test they did to see if I can have surgery. I have had the flu, pneumonia, and a bunch of other crazy things have come up. We just found out about three days ago that I can have surgery and scheduled it for December 16th or 18th, right after I get out of this semester of college, because the surgeon told me I shouldn’t be in school and I shouldn’t be working for about a month after the surgery. I should go on picnics, watch movies, but not put any stress on the brain.
My epilepsy came out of the blue about three years ago, almost four now. It’s hard to remember those years of schooling without seizures. The first year, my junior year of high school, we didn’t have insurance so I therefore had seizure after seizure, since I had no medicine. I could have six seizures in one day. But once some insurance company, CRS (Children's Rehabilitative Services), picked me up out of the blue these past years have been full of trying to find the right medicine to stop my seizures and seeing doctors about other options than meds. The longest any medicine has ever worked on me is six months. I’ve slept with my mom so she could watch over me throughout the night so many times now my dad prefers the couch.
So once we heard I might possibly be a candidate for surgery I was so excited, and we immediately started the process of taking all the tests and doing everything else to come to this end where I find it hard to believe I’ve finally reached. Luckily I have an amazing mom who has recorded everything, all the names of the doctors we’ve seen and tests I’ve done because I’ve done so many I can’t remember what they’re called. I just remember what they feel like, and everything that has gone wrong with them, not that the test itself is wrong. We’ve just found out that I’m the 1% chance of anything going wrong. I’ve passed out and my heart has stopped beating for six seconds. I was about to leave once and had a seizure right in front of the hospital, only to learn later after staying in the hospital for a week that it might have been caused by one of the six strokes I had due to the procedure they’d done. One test they did required me to stay in the hospital for a week where they wanted me to have seizures so they could record them. Sleep deprivation would help cause these seizures so in that week after staying awake for thirty hours straight I had six or seven seizures within twenty-four hours. I can’t remember.
So now that we’ve finally reached this point…this point where the surgeon asks me if I want to go through with the surgery…in my mind I’m thinking, “Well do I?” as my mouth immediately says, “Yes.” Throughout that entire day my mom talked on and on, so cheerfully it seemed, about it to everyone, on the phone, my friend in the car, Emily Redford, and I kept thinking in my head, “Mom, it’s not your brain.” Because deep down inside, I truly was scared. I’ve come this far, and now…well, now what? I’m the 1%...what if something goes wrong? I know my surgeon does these surgeries every week. He says I’m a normal case but I don’t think I should be looked at as that. I think I should be looked and cared for with such tender care and extra precaution that I will be assured they’re doing their absolute best to try and take care of me and make this work.
The last couple of nights I’ve prayed to my Father in Heaven and told him I’m going through with this surgery. I told him if I shouldn’t do this he should tell me so, but I am taking action like I know he wants us to do. And then today I was finally able to go to My Stake Conference, My Mesa East YSA Stake Conference. I did go to church last week, but it was in Prescott to see a cousin’s missionary farewell talk, and this felt so wonderful to finally see people I knew and it felt like it had been forever instead of only three weeks. Lots of people asked how I was doing and it was nice to feel cared for.
I know I was where I was supposed to be at the right time today. The spirit was so strong. I learned so much, and I feel that every speaker came prepared and spoke with power. The greatest and strongest part of the meeting for me however was when our stake president, President Sandstrom, spoke. At first he seemed to just be telling a story, about his loving wife. He mentioned over and over again how optimistic she is, even during this time he was telling us about when they found out she had a tumor in her brain. She ended up having to have brain surgery, and for the next couple of years had terrible headaches and didn’t feel too well but was still her same old optimistic self. I feel my prayer was answered today with his talk…because the surgeon who worked on his wife, Kris Smith, is the same surgeon who will be working on me, in the same St. Joseph’s hospital in Phoenix where I will have my brain surgery in order to hopefully stop my seizures. I feel God is telling me to go for this surgery and trust in him, and I still don’t know if my seizures will stop, but I also feel that I need to take a more optimistic outlook on this, and an eternal perspective. I feel I’ve always been good at looking at the eternal perspective in life but realized today that I haven’t been with this surgery. I’ve just been thinking about driving in My car which I’ve already bought and my older brother is driving everywhere, and wondering what I will do if I need to take meds for the rest of my life because I still have seizures. You know what, I need to just go forward with this surgery, put my trust in God, and always live my life with a smile. Every time I see the word, smile, written out I’m unable to not think of what my mom has ingrained in me of what she thinks that word means. SMILE-Spiritually Minded Is Life Eternal.