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.
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| 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…
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| 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.
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| 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? *
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| 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.
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| 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.
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| Matty and Flo - the greatest EEG Tech! |
**Please consider supporting www.MatthewFetzerFoundation.org
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.
