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

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 16^th or 18^th, 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.

Thurs 11/21/13 Scheduling Surgery for Dec 16, 2013

Amber from Dr. Kris Smith’s office called today.  She is scheduling Breck’s surgery for 12/16/13.  The surgery will take place at St Joseph’s Hospital in Phoenix.

Prior to surgery on Friday 12/13/13 Breck has to go in for some pre-op tests and another MRI.  This will also be at St Josephs Hospital.  Then she needs to check in on the 16^th at 5:30am.  The surgery should take place around 8:30am.  I do not know how long the surgery is to be but hopefully it will be discussed in the paperwork they will be sending in the mail.

I asked if Amber was concerned about getting approval from CRS and she said – “no”, that she has worked with them in the past.  She also mentioned that she would contact Jennifer at CRS whom has helped us a lot to make sure everything is in order. 

So – moment of honesty – I shed some tears on my drive home after receiving the call.  Grateful for the progress we have made and asking once again for confirmation / peace that we are on the right road.  Then I thought of all that we had gone thru to get to this point.  All the miracles that have taken place and in my head rang these words so loud it was as if I was speaking them… “I know God lives, He loves me, He is my Father in Heaven.  He has given us this opportunity to live and experience and because of the mercy and grace of the Atonement – through Jesus Christ we can be clean from this world and return to live with him again”… that was the bottom line… My faith, my families faith has only grown thru this trial.  I don’t know what the future will bring.  We pray for the miracle cure for Breck… but in the end I know no matter what – She / We will be ok and that we are remembered and loved from above.

Thank you all for the love and support --- the prayers from those who are far away… your faith means so much to us.  We will keep you posted…

Happy Thanksgiving --- wishing you blessings and smiles

Sean A’lee

Thurs 11/14/13 – Dr Kris Smith – surgery options

On November 14, 2013 we met with Dr. Kris Smith to discuss options for surgery for Breck.  He stated that based on the last Selective WADA test and the group conference that Breck is a definite candidate for “Amygdalohippocampectomy” surgery.  Say that 3 times fast.  What that really means is that they will go in and remove the left hippocampus (about the size of your pinky finger) along with a small section that is attached to the hippocampus (about the size of your thumb nail) with is called the Amygdala. 

Recap: 

We have a hippocampus on each side of the brain.  A left and right one.  The Hippocampus is responsible for retrieving memories.  Not storing them; although they can store temporarily short term memory.  Because there are two of them that are connected if one isn’t working the other can compensate and work for both.  The last Selective specialized WADA test they numbed the left hippocampus to see if the right one could do the work of both.  Breck scored 15 out of 16 correctly showing a very high probability that her memory will be ok with the left one removed.

The amygdala is attached on or near the hippocampus and is responsible for giving us some emotions tied to our memories.  From my reading it seems the emotions dissussed are more the fear or feelings to help in a safety response situation.  Such as walking in a forest and seeing a coiled object --- you would immediately freeze and think snake… how to move quickly or run…  This is very interesting to me.  Nowhere can I find amygdala and pleasant feelings discussed.  For example – think about how certain memories almost still feel like you are there.  Or a song that brings back a flood of emotions or memories of people and places.  Well, Dr. Smith talked to Breck about the feelings she has before a seizure – the ones where she feels them coming on.  There is fear, anxiety and a sense of dread centered around this.  He explained that is why they remove the amygdale --- to help minimize these feelings especially when the seizures should be non-existent.  I didn’t think to ask how that works when she still has the right amygdala.  I wonder if the feelings are stronger because the seizures start on the left side?  All I remember is him saying that the brain will take awhile trying to figure out what happened or where the hippocampus went and that she shouldn’t have those same Auroras.  Breck seemed really ok with that part of it. 

Here is a diagram showing where these two parts/pieces of the brain are located.

Concern:

Breck expressed her concern with having complications with the last two procedures.  She wanted to make sure Dr. Smith would have every precaution or added staff needed to keep her safe during the surgery.  

Answer:

To this Dr. Smith tried to reassure her that in reality this is the safest of any surgeries she could have.  The others would remove more of the brain and have more risks.  Even the further testing would have required more entries – incisions into the brain with multiple risks each time.  He also stated that her complications came from the angiogram – entering through the artery in the groin and going up thru her veins and main artery. 

Surgery:  Possibly Dec 16th or 18th... just one month from now.

This surgery starts with a small incision over the left ear… looked as if about 2 inches in length if I were to guess.  She will not even have her head shaved.  Dr. Smith said he may have to shave a very tiny amount but nothing that will be visible or noticeable afterward.  Then they will go into the brain, under the temporal lobe and back up to remove the hippocampus and amygdala. 

Recovery:

She will be in the hospital for about 2 days at least and then be able to come home and rest.  She will have a follow up appt in a week and be released to light activity.  Dr Smith said she would have a headache and general soreness for a few days after the surgery.  This is normal and is usually controlled reasonably with pain meds.  He suggested she not be in school for at least 4 to 6 weeks or to overwork the brain while it is healing.  He does want her to be active as far as walking.  This is the best way to avoid pneumonia and blood clots – both risks of any surgery.  Breck and I talked about easy hikes and picnics… light reading for pleasure and watching movies – mainly just enjoying her days.  We also discussed how important good sleep is going to be for recovery. 

Other concerns:

I specifically tried to discuss Breck’s low heart rate and the need for someone to be monitoring and giving her meds to keep it up during and coming out of surgery.  He seemed to agree.  I also pointed out that perhaps her last seizure came from the meds wearing off and Breck not having enough time in recovery.  I will be stressing that some more --- I believe the timing of the meds wearing off happened to be around the same time Breck started moving and heading down to the car last time. That could be why she “tanked” and  caused the seizure.  I don’t remember Dr. Kris Smith saying much other than agreeing that it could have been a good explanation. 

Lastly I wanted to post a picture of Breck’s brain showing the damaged hippocampus.  This picture is as if she is looking at you.  So what you see on the right side of the picture is the left side of Breck’s brain.  There inside the purple dots are both the right and left hippocampus.  Her right one is clearly bigger and more “plump”.  On her left side you see more “white” surrounding the shriveled hippocampus. This white area is empty space or space filled with Fluid.  You can see why they say the left is very damaged.  Just an interesting picture. 

Questions:

How much does the amygdala control?  Will Breck “feel” differently?  Even tho she still has her memories and can be retrieved – will she feel less or nothing at all with certain memories?  Will she be able to feel past memories – such as an amazing birthday or vacation times?  How does that work? 

Will her personality change?  Will this affect her “moods”?  Do people have depression after surgery? 

One of Breck’s main questions --- what precautions are they going to take exactly to assure her the safest surgery?   

I am sure more questions will arise as we get closer to the day.  Moving forward in Hope… smiles

Fri 11/1/13 Breck has Pneumonia

Breck ended up sick Wed and Thursday.  We figured she had caught the flu bug from the hospital.  However, she continued to have pain behind her left shoulder blade.  And she was having trouble taking in a deep breath.

I was able to speak with Connie (Dr Schusse’s nurse) and Jennifer with CRS and they both said Breck should be taken into the ER to have an xray.  And – not to mention, Melody (my bosom friend) who is a nurse also said to take her in.  Oh, how Breck & I DID NOT want to go to the ER!

We ended up going to East Valley Urgent Care on Val Vista & Guadalupe which I knew could perform xrays.  Dr. Duan Copeland confirmed for us that Breck has Pneumonia.  He prescribed Amox Tr-K and asked to see her again in a week for a follow up xray. 

We are very grateful to have only spent 2 hours instead of all night at an ER.  We are looking forward to Breck feeling better in a couple of days. 

Smiles