Ashleigh at the Cleveland Clinic - Resection Surgery

Friday 16th March, 2018

This will always be an important date to me.  It is the date my courageous, beautiful daughter (I'm not talking about looks here but the essence of who Ashleigh is) had a section of her brain surgically removed by choice.  To her though, I don't think she felt it was a choice.  If she wanted a chance of a future that she had some choices and ability to plan for, without epilepsy taking over and getting in the way, then she needed to do it.

Dr William Bingaman is the Neurosurgeon who completed Ashleigh's surgeries.  Ashleigh took to him straight away.  He is a joker and a confident man but he also really wanted to understand Ashleigh to see if she could cope with this.  He loves getting her fired up abut sport.

Dr Imad Najm is the Epileptologist who the Director of the Epilepsy Unit here at The Cleveland Clinic.  He is who first accepted Ashleigh coming over here and has been in charge of her case.  He said they are all very excited by the possibility of helping Ashleigh and said that it is difficult to explain the joy that they feel when they can help someone whose life has been made so difficult when living with epilepsy.

Dr Juan Bulacio is the doctor responsible for reading Ashleigh's SEEG and completing the stimulation test which looked at what was likely to be affected by the surgery.  His manner was lovely and he was very good at extracting information from Ashleigh about what she was feeling through all the giggling during the test.

Richard stayed with Ashleigh the night before surgery.  It's hard to step back when I have been there for everything but it was important for their relationship and Ashleigh knows I'm there whenever she needs me.  I thought maybe Joseph may need me but he is not letting anyone in right now.

Ashleigh was going to be first on the list for Dr Bingaman so would be heading down at 7 or 7:15 am.  We were all up early and left the apartment by 6 am to be sure to be at the hospital by 6:30.  We walked in and Ashleigh was already in her hospital gown with everything set to go.  We got a few photos and then she chose to pass the time by watching Blacklist on Netflix.  The room was quiet - she didn't want to talk and definitely didn't want fuss!

          

Then she was off.  It was a very emotional walk with everyone working on the ward coming out to say goodbye and good luck as she was wheeled out and us carrying her things behind the bed as it was walked along.  We said our goodbyes at junction in the corridor and left to wait.  The operation was scheduled to be between 3 and 4 hours.

They have a great system where you get given a pager and receive updates at least every two hours.  Then when the surgery is complete an announcement is made to come up for the doctors call.  This happened at 12:10 pm.  Dr Bingaman said that it had all gone well but that Ashleigh was slow to wake up so he hadn't seen her movement yet and he would probably want her to have a CT scan to check everything was clear and that it might be an hour or two before we could see her.

It took the full two hours.  I was getting very fidgety and pacing by the end of this.  Then Richard and I got to go and see her in recovery.  They warned us that her left side was weak.  She opened her eyes and spoke a little but was slurred and was able to grip Richard's fingers with her left hand.  What a relief!

Then she went to Neuro Step-Down Post Anaesthesia Care Unit.  Only two of us were allowed in there at a time.  Nana, Darryl and Joseph each had a quick visit and then said goodbye.  We were all so relieved to have this part over with and know Ashleigh was still with us!

     

Dr Bingaman came and checked on Ashleigh at about 6:15 after finishing surgery for the day.  Her speech and movement on the left side had deteriorated.  He said that this would be worse due to swelling and to expect her to be worse the next day but to order a physical therapy assessment.  One thing that was apparent was that her sense of humour and personality were still there at the forefront.  Ashleigh's pain stayed pretty well under control through the night.  At 4 am they tried getting Ashleigh to walk to the toilet.  She was exhausted after this and fell asleep on the toilet causing some concern as she stopped responding and they were worried her right eye deviated.  There was some concern it was a seizure and an assessment was completed but neither Ashleigh or I think it was.

On Saturday we were able to come back to M60 and what feels like old friends now.  The surgery has left Ashleigh very weak on her left side with pretty much no movement in her hand, her speech is slurred and she needs to be supported by two people to walk.  Ashleigh shows improvement each day and she is still confident its the right decision.

I have had moments of thinking "what the heck have we done?" particularly on Sunday when they took off her dressing and removed the drain.  I knew the scar was going to be a decent size and it wouldn't be pretty but I looked at it the difficulty Ashleigh is having to do simple things and for the first time questioned our decision.  I hadn't questioned it being the right choice at any other time in the process.  I was struggling to hold it together for a time but I needed to hold it together for Ashleigh.

      

Yesterday and this morning assessments were done by physical therapy and occupational therapy.  They have recommended that Ashleigh go into Rehab Hospital two stories up from where we are now so that Ashleigh will be getting 3 hours of rehabilitation each day as they are working hard to get her ready to leave for the 30th March as planned.  This has been approved and that is the next part of the journey.  The staff in the Epilepsy Unit have been amazing and the care Ashleigh has received exceptional - we will be sad to say goodbye.

So tomorrow...Rehab...