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

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

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 - 

Mon 10/28/13 – Seizure her sleep

This was Monday night.  About 2:30 am I awoke to slight gagging / gurgling noises.  I woke Breck and asked if she was ok.  She tried twice to tell me something but it didn’t make any sense.  I couldn’t tell at all what she was trying to say.  We at that point noticed two large wet spots on her shirt and her pillow was very wet again.  Very signature of her seizures.  After about 5 minutes she could speak again and went back to bed. 

I didn’t notice any more that night and she stayed home to rest from school on Tuesday.

Still waiting to hear back from the neurologist

Smiles

Fri 10/25/13 – Back to the ER - Possible Stroke

When Breck woke up Friday morning the tingling in her face (right side cheek, lips and tongue) were still present along with tingling in the fingertips on her right hand.  At this point I didn’t know quite what to think.  But I figured I would do as the ER Doctor Beck said and let someone know. 

At 10am I spoke to a nurse at Dr Albuquerque’s office.  He was in charge of the Specialized WADA test.  The nurse told me that she didn’t think the tingling had anything to do with the procedure and to make sure we called her neurologist. I then called and left message with Connie (Dr Schusse’s nurse – who is Breck’s neurologist) 

A little before 4pm I received a call from St Joseph’s 4^th floor.  A nurse was checking up on Breck and asking me how she was doing.  I said “You do know she was admitted to the ER yesterday – that we never made it to the car?”  She sounded very surprised and said “no” – that there was nothing in her file stating that.  At this point I restated what had gone on the day before and how disappointed I was in the ER Docter (Dr Lauer) whom I had specifically asked to call up there.  As the nurse was talking – her fellow nurse mentioned to her that they were aware of the seizure – that the two volunteers with the wheel chair had informed them and they had called Dr. Park & Dr. Albuquerque.  I do not know if they knew Breck was in the ER.

After this call I was really steaming! 

At 4pm I then left another message for Connie at Dr. Schusse’s office.  At this point I called Dr Schusse’s office right back to find out if Connie was even working today.  They told me she was and asked what was going on.  I told them that Breck still had tingling and that we were told it should be gone by now.  She found Connie and told me that Connie would be calling me on my cell right then. 

I still had to work at the ranch so I headed back down to my office. 

At 5pm I received a call from Dr. Albuquerque’s office.  The nurse said she reached the Dr. and his message to me was to take Breck to the ER if it wasn’t gone the next day.  I said ok.

5:15 – I received a call from Connie (Dr Schusse nurse) We discussed increasing Breck’s medicine but then after hearing more and my continuing concern about a stroke – she decided we needed to speak with Dr. Schusse.  She put me on hold and tried to reach her.  After about 10 minutes she came back and said she couldn’t seem to get a hold of her and that she wanted to call Dr. Varma.  I was put on hold again.  When she came back on she said that Dr. Varma was very concerned and that he was going to call me directly. 

At 6pm Dr Varma called.  He asked me to repeat what had happened.  I did.  Then he said that we needed to go to the ER that night.  He said it sounded like a stroke and that unfortunately the time to administer meds to stop the stroke was long past.  He explained that when a person has a stroke if they get help within the first 2 hours they can give meds to stop the stroke.  He also explained that he didn’t think the tingling was seizure related because she hasn’t had the feeling before.  See once someone starts having seizures they are pretty predictable.  Most people have the same kind of seizures.  And although Breck has several different kinds they still follow a recognizable pattern.  He told me to let the ER know that Dr. Varma requested a CT Angiogram.  And that the best test would be an MRI but it was highly unlikely to receive this test… that it is a hard test to get from the ER due to the time constraint.  Usually takes 12 hours to get one ordered.  He also warned us that if they find a stroke then Breck would automatically fall under a “stroke victim” status and be given many different tests that probably are not exactly needed.  This is because St Joseph’s hospital has been named a comprehensive stroke center by the Florida Agency for Health Care Administration which certifies that St. Joseph’s Hospital is recognized for its delivery of the highest quality care to stroke patients.  In order to have this designation they have to follow National Guidelines and procedures for ALL stroke victims.  This includes many tests to determine what has caused the stroke, even if they would know that the stroke was caused by her procedure the day before. 

Dr. Varma also said that the other thing it could be is a vasospasm, spasm or narrowing of the blood vessels.  This also would only show thru the CT scan or MRI. 

Depending on stroke or the spasms would determine which meds would be given.  If a stroke then aspirin and if the spasms some other drug (don’t know the name).  Either way it was important to go in and in either case we could not reverse what has already happened.  Also – either way the tingling should go away in a week or so.

Breck and I arrived at St Joseph’s ER at 7pm.  We chose to go there as all of her testing was done there the day before and I wanted her records to be easily accessed.

Once admitted to ER – they performed a CT Angiogram which came back showing nothing.  The resident neurologist was still concerned and decided to go ahead with an MRI.  This would mean many more hours in the ER.  He did warn us that it most likely wouldn’t show anything but at least it would put our minds to ease. 

It wasn’t until the next morning Saturday 10/26/13– around 8am – after being moved to 4 rooms within the ER that a nurse came in and informed Breck that she was being admitted to the hospital.  We were really confused. 

Soon after the Resident neurologist came back in the room and said “ I am sorry to have to give you the bad news but Breck has had several – at least 5 strokes.  And because of her seizure history she will most likely start having more seizures of a different nature”.  Breck started to cry.  He also said they would need to many more tests as now she falls under a “new” stroke victim even though the stroke is well past the 2 hour mark.  He ordered another MRI to look more closely at the arteries and and Echocardiogram to look at her heart.  They also started taking blood samples checking her cholesterol & blood sugar along with other things I am sure. 

Now even though Breck was told she was being admitted at 9am she did not make it to her room on the 5^th floor until 4pm.  That means we were in the ER for 21 hours.  We were exhausted!!!  This ER has you share rooms and only has recliners – no beds. 

Grandma Bevell, Aunt Judy and my mom came by to see Breck and bring food. This helped to make the last few hours move along for us. 

Once up in her room Breck relaxed by doing homework.  We had emailed her teacher but Breck couldn’t rest until her homework was done and emailed in.  What a diligent student!

Things slowed down from here.  My mom stayed with Breck and I.  John came up as soon as he could get away from the ranch.  Breck’s Bishop Woodruff and his wife came by to see Breck as well. 

It was very strange to look back on and realize that Breck was never once connected to a monitor for her heart and pulse.  She is have an IV and bag – but even that she had to carry her bag around with her. Usually they have it on a pole… but not this time.  They did intermittently check her blood pressure and continue to take blood samples. 

Sunday 10/27

Breck was told that many “experts” had reviewed her tests and that in fact she did NOT HAVE a stroke but instead it looked as if she had experienced the vasospasm, spasm or narrowing of the blood vessels.  This was good news as the brain heals much better and that we can relax about the ongoing fear of strokes.  They didn’t prescribe any meds for that though.

AND when the actual discharge came the nurse stated that Breck’s diagnosis from the hospital stay was a “seizure”.  I was very surprised and not happy!  I questioned the stroke and / or spasms.  I was told again that Breck DID NOT HAVE a stroke and that they couldn’t be 100% sure about the spasms so seizure was the diagnosis.  Breck was given her discharge papers and she WALKED out of the hospital about 5pm. 

 Notice - we are leaving with more than we came in with!  Thanks to a friend of Brecks.  

After getting home I wanted to review her discharge papers and noticed that page 3 was torn out of the packet and missing!  This has raised many questions in my mind.  I will have to wait until we can see Breck’s neurologist.

At this point we were just glad to be home.

Smiles

Sean A’lee

Thurs 10/24/13 – Specialized WADA – Discharge – straight to ER

St Joseph's Hospital 4th Floor to Parking Lot to St Joseph's ER!

Approx 1pm… After Breck signed her discharge papers – Looking great – I headed to get the car.  Two volunteers wheeled her down to the pick up zone.  As I drove up I could see her being wheeled out of the main lobby towards me.  “Oh, No… she doesn’t look good!”  I quickly ran over to her.  She whispered “I don’t feel good”  Then her head went back, mouth turned up on the right side, right hand clenches in a distorted fist.  I quickly tell one of the girls to go get help – “She is having a seizure!”  Was very short – maybe a minute.  Breck whispers “Mmmomm”.  I can tell she is coming out of it.  But she still couldn’t lift her head and her top lip is pure white, with the bottom lip turning blue.  She is also turning blue around the nose.  We wheel her back into the lobby where a respiratory therapist runs over and slips on a device to monitor her oxygen level.  She too loudly calls over to security “This mom needs some help here… her daughter is still blue!”  Another nurse comes over – then we start pushing Breck towards the ER – I am holding her head while they push.  They are talking to her.  “Breck!!  Stay with me!  Are you here?  Breck?”  Once we made it to the ER they quickly transfer her to a gurney – they were headed out the door coming at us.   

Once she was in her ER room and connected to the Monitor – she soon started looking better.  I left to go back and re-park my car.  One of the volunteers was sweet enough to stay with my car as I had left my purse and keys on the front seat with the windows down.  How nice of her!

As soon as I got back to the ER – a young nurse came in and stated “Ok, I guess you’re being released.  You can go home.”  I looked at her and said “They just put her in the bed?”  She stated again, “No, it says right here that after resting for 2.5 hours she can go home.”  I tried to patiently explain to her that those discharge orders were from upstairs where we had just come from.  She looked at me and said “ I am confused.  Let me go look again”.

The ER Doctor was Dr. Donald J Lauer.  He asked the basic questions concerning seizures and what had happened.  I explained Breck had just had a procedure on the 4^th floor – a “specialized WADA” test and that she never made it out of the wheel chair – she went into a seizure and was turning blue.  He then asked me “Do you always take her to the ER when she has a seizure?”.  I stated “No, but she just had a procedure, was turning blue and the number one risk is a stroke”  I strongly asked him to just call upstairs to Dr. Park or Dr. Albuquerque and they would tell him.  During this time – the young nurse or assistant came back in and said “Ok, you will be getting blood…”  I looked at her and said “What?  I don’t understand!?”  She then pointed to the blue band on Breck’s arm and said – “that blue band means you are getting blood”.  I explained again, “No – that blue band was put on upstairs just in case she needed blood from her procedure.”  She again stated she was confused and would go look at the chart! 

Another nurse then came and I repeated everything to her.  I asked her to please check with the 4^th floor.  Especially worried about a stroke.  She left and I never saw any of them again. 

About 4:30 we met Dr Brian Beck.  At this time Breck mentioned that the right side of her cheek, lip and half of her tongue felt very strange.  Tingly.  I again repeated what transpired from the WADA test, parking lot and my worry of a stroke.  I actually said “I don’t want to take her home only to find out that we have to come back and that she had a stroke!  I want her checked out while we are here!”  He agreed.  He did the normal physical neurological testing.  Hold up your hands, palms up.  Keep them there.  Can you stick out your tongue?  Can you spell the word “world” backwards?  What’s this? A pen.  Good.  What’s this?  A watch.  Good.  What day is it?  Where are you?  Can you feel this?  How about over here?  Lift your leg… don’t let me push it down.  Point your toes.  Good.  Flex your toes.  Good.  Can you see which had is moving? (from the sides of her eyes).  Good.  Then Dr. Beck states “Well, outside of the tingling, I don’t see any evidence of a stroke. The tingling could be just a side effect of her seizure.  Has she experience this before?”  Breck tells him “no”.  He then says it will most likely go away by morning and if not to be sure to let someone know.  But for now –can go home. 

I guess there was a shift change.  Dr. Lauer had gone home – the new attending ER Doctor – don’t remember his name came in and discharged us.

At 5:30 pm after 4.5 hours She is exhausted.  I am exhausted.  I go and get the car.  Breck is wheeled out of the hospital a second time and we arrive home by 6:30pm. 

I had Breck sleep with me.  We were in bed by 8pm and slept great all night.  

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