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