” I Remember…….”
Meredith’s Mother shares memories of her daughters journey with ANE.
(English text below when viewing on tablets or phones)
還記得醫生恐怕藥落得不夠快，親自跑去藥房取藥，還要多打幾粒豆再加a-line, central line
I remember your last meal before ANE was sausage fried rice.
I remember when the ambulance just arrived at the hospital, you started another round of febrile seizures.
I remember the nurse said she hadn’t seen such a high fever: 41.9C.
I remember how I lost you bit by bit while waiting for a diagnosis for days.
I remember you tried so hard to take some congee but failed because you had already lost your ability of swallowing, then you went into a coma later that day.
I remember we needed to call every private hospital for an MRI although you had already lost consciousness but you were still in the waiting line at this hospital.
I remember I told your grandma that you won’t be you anymore in ICU.
I remember the doctor ran to get the med’s on his own as he was afraid it’s too late.
I remember your last words before your coma were ‘Ka Ka is having a football lesson’.
I remember the doctor said we needed to be prepared as it’s the worst case.
I remember there was no progress on the GCS (Glasgow Coma Scale) level after days, the doctor did a blood transfusion for you and considered plasma exchange.
I remember your grandpa came to ICU at 3am.
I remember I held you for the 1st time on the 15th day in ICU with the doctor’s permission.
I remember how startled you were when the nurse changed your feeding tube every week.
I remember I couldn’t hold you up as you had lost all your muscle tone.
I remember the months that you hadn’t gained back your vision, you always liked facing the window.
I remember how with your involuntary movements you kept hurting yourself.
I remember you had 7 seizure attacks in one day, doctors used all kind of med’s, still can’t stop the seizures.
I remember you lost all the hair in the back of your head because you were bedridden so long.
I remember when I looked at your MRI, so many damaged parts in your little brain.
I remember the doctor said he should have put you on treatments earlier but ANE is so rare.
I remember, Meredith, my brave warrior, I remember…
ANE in 2019 at 2 years old.
” I Remember……..”