Ashleigh at The Cleveland Clinic - Testing, testing 1,2,3

We arrived in Cleveland just before midnight on Friday 23rd February.  We had access to our permanent accommodation from Tuesday so had booked an apartment within walking distance of The Quicken Loans Arena as we planned on going to the Cleveland Cavaliers NBA game on Sunday together as a family prior to Ashleigh's admission on Monday.  We also went to Kid Rock on Saturday night (worthy of a blog all on it's own!).  Ashleigh didn't come - she needed some space after sharing a room with Joseph for a week, was tired and just needed time to herself understandably.

The NBA game was an experience - there is always something going on for any breaks in the game.  Going to any event in America makes you realise how lucky we are in New Zealand.  There is full security including making you empty the bags, not touching anything themselves and top it off by going through metal detectors.  The Cav's lost and were a bit disappointing because they clearly dropped their head for the whole last quarter of the game - Ashleigh's been busy telling every person who asks that she just needs to teach them some basic netball skills regarding movement - it's a great way to win them over!

First impressions of Cleveland are that it's old industrial and the central city actually reminds me a bit of what Christchurch was like pre-earthquake - a bit old and rundown with the most of the life being lived in the suburbs.  As you drive around Cleveland you realise there are so many hospitals and there are branches of the Cleveland Clinic all over the place, including next to where our apartment is - Cleveland is very proud of it's University Circle - an area of universities and hospitals.  The Cleveland Clinic was started in 1921 by four men, George Crile, Frank Bunts, William Lower and John Phillips, who wanted to start a hospital where the experts worked together as a team and with the goal of "better care of the sick, investigation of their problems, and further education of those who serve."

  

I tried telling Ashleigh that she was likely to be admitted when we arrived on Monday but she had it firmly in her head they would be doing things like MRI's that are easier first.  We went to meet with Jasna from Global Patient Services (they clearly do this often!) to complete a small amount of paperwork and then we were introduced to Bilen (from Turkey) who is our Coordinator to show us to our first appointment.  To me that shows the size of the place and the scale of things they do - and at the main entrance there are a minimum of 3 people with red coats there at any time who are there to direct people to where they need to go.

There was no mucking around - Ashleigh was admitted and the tests and questions started straight away.  Ashleigh and I got the full quiz on Ashleigh's history - there was surprise and shock at the number of medication changes.  Darryl left after listening for close to 3 hours to pick up Mum to do the night shift so I could be at the hospital during the day when the Doctor came around.  Ashleigh had 41 electrodes glued to her head in a specific mapping formation.  They also put one in each cheek via needle at around the joint of the jaw to help measure activity as well.

There are technicians monitoring the EEG 24 hourly and as soon as something was not quite right, they were in to fix it up.  Ash was not allowed off the bed (same as at home) but even if she wanted to go to the bathroom had to call a nurse - at home we just deal with that ourselves.  They check her vitals and responses to everything every 4 hours - pretty standard.  When she had a seizure there was a special button to push that meant all lights came on, alarms went and at least 5 nurses would come into the room and start asking Ashleigh questions - what day is it? (difficult when you've just lost a day and the way they do a date is back to front!), where are you? Who is this person? What year is it? Touch your nose with your index finger.  By the end of the week Ashleigh was doing them in her sleep when they came in.

I'm joking with Darryl we need to start calling him James because he chauffeuring Mum and I to the hospital and back to change shifts - great fun when the driving is difficult!  We have paid for parking for the month and it's good value and makes life easy.  There's a tunnel under the road to the Clinic.

    

Ashleigh was in for what is called an Ictal SPECT - ictal being during seizure, SPECT being Single Photon Emission Tomography - where a radioactive isotope is injected into Ashleigh at the beginning of a seizure, then a scan is taken.  It looks at where the blood flows when a seizure originates and shows the area of onset, hopefully, as that uses more blood flow.  To get this, her sleep cycle is reversed because a nurse needs to be sitting in the room watching her sleep waiting for us to tell them that she is having a seizure.

Ashleigh had a seizure Tuesday morning with Mum pre-SPECT and then one with me once the SPECT had started.  So many nurses came and asked questions and pretty much interrupted the seizure.  Dr Najm came in at around lunchtime and he said that when we first injected he was thinking "why are you injecting for?" because at that stage he couldn't see anything.  He said that he would like to see a bigger seizure.  Ashleigh's response was "I'm here to perform!"  At about 3 pm she performed with a 2 min 34 second secondary-generalised tonic-clonic seizure followed by slurred speech, lack of control over her limbs and difficulty walking.

We got three ictal SPECTs completed during the week.  Ashleigh struggled on Thursday.  She was sleep deprived - she just doesn't sleep the same during the day - and she got told she was going to be in over the weekend which she was gutted with.  On top of that her IV failed and they had to try at least 3 different places to get it in and she said they tried different pathways each time they tried to put the IV in, then straight after some of her electrodes weren't working properly so they scrape the old gel out and put new in, which scratches her head.  

      

She said it's really hard to explain how much pain she is in while they're testing; the discipline required not to scratch her head where the electrodes are glued on because it messes with the recordings; how difficult it is moving with wires attached to her head, stickers on for constant EKG, air-massaging things on her calves so she doesn't get blood clots; nothing is easy!

The Doctor listens to us so well. I can't explain how much of a relief it is to hear the Doctor say that I am clearly the expert because I know when they are happening so quickly.  It was something we were scared of before we arrived - that they would be the experts and wouldn't listen to us.  The empathy and listening to us all has been excellent and has put us all at ease - most especially Ashleigh.  As soon as Ashleigh asked if she could be out over the weekend if nothing extra was going to be gained, Dr Najm said that of course she could.  It immediately helped Ashleigh's mood.

      

Friday was the MEG scan, which is like a MRI but measures the magnetic current created by the electrical current generated from brain neurons.  Then it was baseline SPECT - not during seizure.  Then electrodes off and discharged to be back for the 7 Tesla MRI on Monday.

We made the most of the weekend going to the Cleveland Monsters Ice Hockey on Friday night.  Ashleigh wanted to get her nails done so that was Saturday morning and then shopping at the Aurora Outlet Mall on Saturday afternoon.  On Sunday morning we got up and drove up to Canada to Niagara Falls.  Darryl got us a hotel room overlooking the Horseshoe Falls.  We just sat there watching the falls as they were lit up at night.  Up and on the road by 7 am to be back to Cleveland for the 7T MRI.

    

The 7 Tesla MRI is still in research phase  - there were 4000 images taken and they are a number of times stronger and clearer than the previous options (sorry I can't remember the number).  Then there was a normal MRI straight after for pre-op information.

Today was a meeting with Dr Najm after Ashleigh's case had been presented to the Patient Management conference with the test results.  So the SPECT scans from the three seizures showed a commonality of where seizures affected.  The MEG scan also fitted with the SPECT.

  

There are 3 areas that are showing up - the cingulate on the right side and around about the area below the Wernicke's area on mainly the right side of the brain but some also showed up in the same area on the left side.  The plan is to put 17 electrodes into the 3 areas of the brain.  Dr Najm described it like a railway line with 2 stations - thinking about mainly the right side.  They know the train goes to both stations, they just don't know which direction it travels.  They want to find the station of origin.  The ones in the left side are to check that it doesn't originate from there.

After meeting with Dr Najm, we met with Dr Bingaman, the neurosurgeon.  Funny guy - some of the jokes regarding the upset he expected about the head shaving were good and he was totally trying to see if I would be prepared to join in.  He has been doing neurosurgery for over 20 years and will use a robot to help with accuracy.  He was very upfront with risks and his record - it was comforting.  There was visits from two research coordinators who want Ashleigh to take part in various studies - she's now part of at least three.  There were more blood tests, forms to sign, a CT scan with more contrasting solution to be injected, another MRI to be done in the morning prior to surgery and we finally left about 3 pm.

Tomorrow at about 1 pm Ashleigh will have her first brain surgery - it will last about 4 hours - the actual surgery part is about an hour and everything else is lining up and double-checking everything.  The electrodes will be in for about a week.  The data will be presented to the Patient Management Conference again prior to the electrodes being removed.

As we left the Clinic today I felt a bit emotional but mostly I feel calm.  I have been working towards any possible solution for Ashleigh on and off for 17 years.  I haven't cared what that solution may take the form of, but particularly with the changes that have occurred since Ashleigh was 14, any solution that offers Ashleigh a quality of life and a certainty of some kind she can live by, is better than what she has at the moment.  Ashleigh works hard to make the most of things (and doesn't always) but how she has kept going and remained positive, I'll never know.  Mum spent the day making sure everything was sorted at home and I know has been a bit emotional but is taking her lead off us.  Joseph has needed some of my time, which I never seem to have enough of for him - he is always put off and it has shown that he needs me.  Darryl is Mr Steady and always the voice of reason but also the one to inject some humour when needed.

Ashleigh has been amazing - the biggest clue - she is eating any comfort food in sight that may fit to some degree with her low carb diet.  I wanted to get this done prior to heading to the next phase but the night has been spent looking forward and not hiding from what tomorrow will bring.  We are at phase 2 - here's hoping we make it to phase 3...