Friday, March 10, 2017

The Spaghetti Hat Lesson

We just got home from Matthew’s “Spaghetti Hat” appointment.  His neurologist taught us this term, Spaghetti Hat, as a euphemism for EEG many years ago when Matthew first began annual EEG’s for his epilepsy diagnosis.  Spaghetti Hat, or an EEG appointment for Matthew translates to a two-night hospital stay.  We are stuck in one small hospital room, one bed, with 23 electrodes glued to his head.  This is considered routine testing for individuals who have epilepsy. 

Spaghetti Hat - the 23 electrodes glued to Matthew's head.
The EEG is monitoring seizure activity, and determining the need for more or less medication. I find it fascinating that these 23 electrodes glued to his head can look inside Matthew’s brain.  I think I have always wanted a glimpse into that beautiful brain of his.  What is it like to be Matthew?  During the 48 hours hanging out with Matthew in the small hospital room, I found myself gazing at the EEG monitor, wishing I knew what the lines meant – wishing I knew what he was thinking.  Would it be easier for me to understand him if I knew what it was like to be him?  Just for one moment…

The EEG monitor that I gaze at - wishing I could translate the lines.

For Matthew, who also has autism and ADHD, staying in one spot for 48 hours necessitates some magic on my part.  I’ve learned to ask for help along the way.  The night before his intended hospital stay earlier this week, I sent an email to over 100 family members, friends, relatives, teachers, camp counselors and neighbors – all people who have touched Matthew’s life.  I asked them to please support Matthew during his time in the hospital by sending him emails and texts, including pictures and videos of his favorite things. 

Within the first hour of being in the hospital, Matthew’s iPad indicated that he had 53 unread messages.  53 friends and family had already reached out with messages of support including photos of their breakfast, pets doing tricks, videos of original songs (thanks, Mari), classrooms full of kids wishing him well, and videos of the garbage truck collecting garbage.  Later in the day there would be more support from family and friends with messages containing pictures and videos of trains, UPS trucks, morning announcements at his former elementary school, trampoline and pogo stick jumping videos, friends taking the garbage out by motorcycle and by roller blades, and friends showing him what they were having for lunch or dinner.  There were so many messages, we didn’t even have a chance to view them all yet!  Thanks to the amazing support of family and friends, the magic was happening.  Matthew stayed in bed (only getting up to use the bathroom) for the duration of the test.
53 messages of support already!  So grateful!
This morning, during our final hours at the hospital, Matthew discovered that he could push the “nurse call” button.  Matthew is a cause and effect kind of guy, so pushing this button gave him so much joy since a friendly nurse would appear at the door each time he pushed it.  After three or four false alarms, I told the nurses to stop coming.  I was trying to pack up our belongings as we were being discharged shortly.  Matty is an expert button pusher and knew when I was distracted just enough with my packing to attempt pushing the button again. When several nurses arrived at our room all at once, the whole crowd of them with concerned looks on their faces and out of breath – they told me Matthew had located the higher level “emergency” button.  Maybe that’s why they let us out early?  *

Matty, listening to a message on his iPad while trying to grab the nurse call button wire from me!
Although I am unable to decode the EEG monitor screen, or see inside Matthew’s thoughts, I imagine that maybe Matthew and I think alike after all.  I pushed my own emergency call button when I clicked send on my email request to friends and family asking for support during our two-day hospital stay.  I am usually the one answering the call for help, so it felt so supportive for me to ask for help and receive it.  Matthew and I both recognize that the support of family and friends is a basic need to make it through our more challenging days successfully.  We both have learned when to ask for help.  Next time you are considering asking for help, think of Matthew, accepting the help of others and allowing this support to contribute to his positive attitude towards life.

Matty with his huge smile - even with the spaghetti hat wrapped like a mummy on his head!

*special thanks to the Nurses, Child Life Specialists, EEG Technicians, Residents, Nurse Aides, and the Music Therapist at the Pediatric Unit of Winthrop University Hospital, who took such good care of Matthew.

Matty and Flo - the greatest EEG Tech!

**Please consider supporting an organization that supported Matthew during his stay, by bringing him a new stuffed animal for being so strong and brave.  This reminds me of all the families who have hospital stays much longer than ours and for much more serious medical conditions than Matthew. 

1 comment:

  1. Emily holds her iPad up to her ear in EXACTLY the same way as MattyMac!! Awesome job to you both.