Meredith

” I Remember…….”

Meredith’s Mother shares memories of her daughters journey with ANE. 

(English text below when viewing on tablets or phones) 

還記得您在家的最後一餐是腸仔炒飯

還記得白車剛到醫院,您忽然捉住我的手,大叫一聲,然後便再大抽

還記得體溫量到41.9度,護士說沒有格可剔

還記得在醫院等待的那幾天,是怎樣一點一點的失去您

還記得您昏迷前很想吃下一口粥,但已經喪失了吞嚥能力

還記得您已經無意識了,仍然未排到照MRI,醫生叫我們逐間私家醫院去問

還記得媽媽在ICU和婆婆說,您再不會是以前的您

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

還記得您最後一句說,家姐去咗踢波

還記得因太罕有而遲遲斷不到症,您爸紅著眼拜託醫生要救您

還記得醫生叫我們要有心理準備,因這是最嚴重的

還記得昏迷指數沒進展,醫生和您輸血,同時考慮要換血

還記得公公半夜三點還在ICU和我們一起

還記得在ICU第十五天媽媽問準醫生第一次抱著全身插滿管的您

還記得每星期換鼻胃管的觸目驚心,口鼻齊出血絲

還記得用凝固粉的水一滴一滴的給您嘗試

還記得想抱您也抱不到,因您的肌力全失

還記得當您眼睛還未看到的時候,您的頭每天總是向著窗的那邊

還記得我們想盡辦法固定您完全沒有力的頸去練習吞嚥

還記得您的不自主動作不停地傷害自己

還記得您一天大抽七次,落盡不同藥也控制不到

還記得您臥床太久,後腦的頭髮都沒有了

還記得在MRI裏,媽媽看到您的腦內有很多很多白色

還記得醫生說:我們應該再早一點落藥

還記得…

急性壞死性腦病變(ANE).2019.兩歲

 

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……..”