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

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

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

Wed 10/30/13 – Surgery Recommendation from Committee

At 3pm Dr Schusse called to tell us the results of the committee meeting today concerning Breck’s surgery.  She said that many of the group still feel that Breck may have seizures starting from other areas near the hippocampus and that more the brain may need to be removed.  However they also agreed that the risk may not be worth the information at this time.  The final consensus is to have Dr. Kris Smith remove the hippocampus and if Breck continues to have seizures she can always choose to have more in depth testing done at that time. 

I was told to call and schedule with Dr. Kris Smith to learn more about the surgery. 

Also we are to follow up with Dr. Schusse in a couple of weeks to discuss her meds.  For now we will continue with what was discussed today. 

Moving forward as usual.  I am reminded of a quote we heard from a movie from Netflix on Sunday night.  The movie is called  The Inn of the 6^th Happiness.  Filmed 1958 with Ingrid Bergman. 

“A life that is planned is a life that is closed.  It can be endured but not lived.”  I love this as we move forward in faith – sometimes only seeing a small glimpse in front of us at a time. 

Smiles – 

Wed 10/30/13 – Feeling sick on the Light rail

This morning – Wednesday 10/30/13 Breck called me – stating that she didn’t feel good on the light rail.  She was very worried that she was going to have a seizure and didn’t know what to do.  I got off the phone and started calling her doctor – Dr. Schusse to see if Breck could take her emergency meds herself prior to a seizure.  I once again was only able to leave a message with one of the nurses.  Between my mother and my sister Erika we made sure that Breck was talking to someone the entire time. 

My Mom had Breck write on a piece of paper her name and that she has seizures along with my phone number and my moms cell number just in case something happened so hopefully someone could help her if needed. 

I called my cousin Trevor as I had remembered that he worked near to where Breck would be getting off the light rail before walking to the school.  He said he would be happy to meet Breck as I figured he could reach her before me.  Right after that my mom reminded me that Trevor no longer works in Phoenix but was in fact in Mesa at the time I called him.  I felt so bad – I tried to get him to not come but he wouldn’t hear of it – he was on his way and even had called a previous co-worker Cindy who could meet Breck. 

Cindy met Breck at the light rail and took her into a conference room where she could lie down.  Cindy commented to Breck how blue her lips were.  Breck was shaking so bad she could hardly hold her phone.  Breck also mentioned that people were very nervous around her on the light rail.  I am sure they figured her as someone on drugs!

Trevor met us at his old office and helped me find Breck.  We (my mom and I) then immediately took her to Dr. Schusse office.  We layed Breck down on the floor and they soon took her back to a room.  Luckily Dr. Schusse and Dr. Varma just happened to be in the office today. 

We are not exactly sure what was happening:

1.       – It could have been a start of a seizure that the meds were stopping but not completely controlling.  This is about normal for the course – we have yet to go more than 5 months with any medicine.  They seem to work in the beginning and then Breck gets resistant to them.

2.       – It could have been an anxiety attack due to the last few days.  Although she has never experienced this before.  Dr Schusse reassured Breck that it would be perfectly normal for her to feel the way she was feeling.

3.       We found out she had a fever of 100.6 and she could be sick with the chills and flu.  They reassured me that the fever had nothing to do with her brain.

What to do?

Dr. Schusse suggested adding her emergency drug to her nightly routine for a couple weeks or month. This would cover where her current meds are falling short.  This would be .5mg of Clonazepam.  Breck can also take clonazepam if she feels like a seizure is coming – this med also would help with any anxiety if that is needed.  She can have a max of 1.5mg per day – no more.

Results from Hospital Stay

Next Dr Schusse said “ So you two understand that Breck did have several strokes due to the specialized WADA?”  We both said “What?  No.”  We explained what we had been told when leaving the hospital.  She and Dr. Varma both stated that we received mis-information from the hospital!  She DID have strokes.  None of the testing showed any evidence of any artery spasms.  They were both shocked to hear Breck was diagnosed with a seizure upon discharge of the hospital.  Dr. Varma claimed conspiracy theory – due to lack of care at the first ER visit and due to the fact that the hospital didn’t want to do all the testing required for a stroke victim.  Dr. Schusse and Dr. Varma both mentioned their personal feelings against the ER Dr. Lauer.  This is why I have been so detailed in my previous posts.  I feel I need to have as much information saved and documented as possible. 

Phyiscal Evaluation today

Dr. Varma did the physical Neurological assessment today.  Breck did fine – with feeling in her limbs, words and eye sight.  The only concern was when Dr. Varma asked her to subtract 7 from 100.  Almost in tears Breck could hardly do that.  Then he continued with “ and 7 less than 93?” and that was hard for Breck.  Dr. Varma “ and 7 less than that?”  Breck missed it by one.  Frustrated Breck said “ I know I should know this!  This is really hard?!”  Dr. Varma noted to Dr. Schusse maybe some deficit to the math area of the Brain… He did not elaborate if it was due to the stroke or seizures.  Dr. Schusse said something about how it could be due to her seizure meds too.  Keep in mind this is an Honor student who completed Trig in high school while having seizures and no meds.  It was a little uncomfortable for me to watch as her mom.  I am sure it was hard for my Mom too!  Very concerning to us. 

WADA Test Results

Dr. Schusse said Breck did great on the WADA test.  She scored 15 out 16 – which signifies that there are no issues with memory loss for the hippocampus surgery.  She is very much a candidate and can move forward with that.  There was still a question as to whether more testing should be done to determine if there are any other areas of the brain with seizure activity. This test would be the probes inserted into the deep tissue.  We discussed our concern of the past complications so far and said that we are not sure the risk is worth the information at this time.

LAST OF ALL: COMMITTEE MEETING TODAY

Dr. Schusse said the committee would be meeting today – this afternoon and that she would relay our concerns as well.  She said she would call right after to let us know what the committee thinks is the best option for Breck at this point.  She made sure Breck still understood in the end it was her decision – no matter what she wanted to do. 

Breck stated at this time that is surgery is still an option she would like to pursue.

There is probably more that I am missing.  Super tired tonight.  Things become a jumble.  I invite Breck and / or my mother to clarify and add anything. This is why I always try to have others with us.  It helps a lot. 

Thanks for all your prayers of concern for us this last week.  It was a full week.  We still held on to counting our blessings – the main one being the fact that Breck seems to be ok as far as physical movement and eye sight.  We will be keeping a close eye on her for sure.

Hugs and smiles - 

Thurs 10/24/13 – Specialized WADA test @ St Joseph’s Hospital

10/24/13 – Specialized WADA test @ St Joseph’s Hospital

We arrived at St Joseph’s hospital in Phoenix AZ at 5:30 am on 10/24/13.  We were quickly admitted and sent to the 4^th floor where Breck was prepped for the surgery.  Anthony was our nurse in the area for outpatient procedures.  He took her vitals and put in her IV. 

We met Dr Park.  He was the one who would be doing the actual “cerebral angiography” (where they put tube into Breck’s veins and through multiple arteries from her groin or leg area to her brain) and injecting the “sodium Amytal” in order to numb the hippocampus.  This procedure is very specific as you have to find the exactly artery that supplies the blood flow directly to the hippocampus. 

We met the anesthesiologist.  I do not remember his name.  We discussed what happened at the last WADA when Breck coded on them.  The plan was to monitor her heart rate closely to make sure it stayed at a good level. 

We met the nice lady (don’t remember her name) who put on her EEG wires so she would be monitored for seizures during the procedure as well.

The last person we were able to see was Manny!  This was a highlight – he is the one who did the procedure last time and that was so scared for Breck.  What a great guy.  He actually came by 2 more times this day to check on Breck. 

RISKS

We were told at this time that there are of course more risks as the arteries and veins are very small.  The largest risk factor listed is a 1% chance of stroke.  This could occur if they puncture the vein wall, or if the plaque which accumulates along the side walls of our veins is scraped off and causes a blockage.  This is usually more of an issue with someone older or much heavier.  Another complication that could occur is if the arteries are irritated and create a “spasm” response (vasospasm, spasm or narrowing of the blood vessels).  The best example I have to think of it would be after running or heavy exercise your muscle is irritated and you get a muscle cramp or charley horse.  Or if you kink a hose while it is running.  This is what happens in the brain.  The arteries get irritated and start to spasm which restricts blood flow and can be symptomatic of a stroke. 

THE PROCEDURE

*** interesting side note.  When they took Breck back the nurse escorted me to the waiting area.  It was in a different area than the last WADA – in fact I was the only one in the waiting room.  I wasn’t complaining as it was quiet.  But later when I passed the other waiting room I realized how far away I had been --- I think they were making sure I wouldn’t be able to see anyone running just in case of a complication!...

Ok.. so after about 2 hours they let me back in where Breck was resting.  At this point we were told how great Breck did.  She passed the WADA memory test with “flying colors”. 

And they were able to use a different plug at the catheter site that actually worked.  This was wonderful because her recovery time was only 2.5 hours of lying straight instead of 6 hours.  Again this is to make sure there isn’t any continued bleeding in the groin area.  This was a different brand of plug – this one is called ANGIO-SEAL, A vascular Closure Device.  We were told to keep an eye on it for 3 months until it completely dissolved. 

We learned that the anesthesiologist noticed that her heart rate was low and gave her something to keep it beating faster as they were finishing the procedure.  He was trying to avoid what happened at the first WADA test.  When she coded on them.  

Breck ate and took her seizure meds around 10:30am.  Then about 12:30 they had her walk around the floor she did great.  She looked great.  I went to validate my parking pass and when I returned she was completely dressed which she did all by herself.  Again – she did great… she looked great.  I headed to get the car and meet her at the curb.  We were being discharged at 1pm.  Yea!!  This was 4 hours earlier than I had anticipated.  We were very happy campers…  for a short moment anyway. 

Until…  continued in the next post. 

Smiles

Sean A’lee