surgery and mama's birthday

I don't know what's the opposite of craniectomy but Aiman had his surgery today to put back a part of his skull today. I was not expecting we would get a date this soon and I guess I got used to seeing with his head sunken in by now. I was informed his surgery went well and now we brace for the second wave of his recovery. Or maybe catastrophe -- I don't know. Traumatic brain injury is a terrible thing, one moment you would think things are getting better. Then you wake up the next day you realise that this is nowhere near to recovery.

I am mentally and financially drained tbh but these days I am reminded by the people around me to not overthink, to let go and to let God. I've somewhat managed to control my anxiety through writing and photography (I've started film photography and it is so fun-- too bad we can't go out that much). Thai variety shows helps. Calling friends helps. Not giving a fuck helps. Writing with a fountain pen helps. Trying to be a better mother/spouse helps. On weekdays I have daily con call with an ex-colleague-turns-good-friend on Skype who happens to be working under the same bank. 

But enough about me. 

The thing is, I am never getting my old baby brother back.

So what's next? I honestly don't know. 
 

and so it begins

As my brother deteriorates, my biggest fear is coming true. Another lockdown in town and now I am at lost figuring out how to manage his hospital appointments, visiting hours etc. Didn't my sister once told me that no man is an island? Then why am I feeling helpless right now?

Remember, things are always easier said than done. As I struggle with my emotions. I am struggling with finding the right solutions, because nothing feels right for now. 

 

KB day trip

Went back to KB for a day trip to visit my ailing uncle. It was a long overdue trip, and I'm glad I got to do this with my sister and my eldest niece. The airport seems like a strange place and minimal crowd (KFC & PappaRich closed down at KLIA2 FYI).

Managed to squeeze in a lot of things in a day - kubur visit, food and food, pasar siti khadijah, visit relatives. All good. We stayed at the Grand River View Hotel and I requested for the river view room naturally. The hotel has seen better days, the corridors look like they came straight out of The Shining, the carpets smelled like 1977, the TV doesn't even work and so much more. Sigh.

Yati Ayam Percik remains my top place to go for their percik but their staff is rude af with zero skills on how to run a restaurant. Non-locals will leave empty handed or angry, whilst I, I don't know man, I just want to eat. My aunt said there are other places that are better than this place so maybe i'll give it a try next time. in December I hope! 

 See you again!

Update from yesterday

Nate, sorry for the late update. Was busy the whole day. Ardani is stable, and so far all the infective cultures came back as negative. But because of the severe brain injury, likely he’ll be in that semiconscious state for a long time. For now he will need the permanent tracheostomy tube (which usually tahan for 6 months with care), and nasal tube feeding. To prepare for care at home, kena ada ripple mattress, suction machine as well. Our nurses ada numbers for the sellers, can ask from them. Physiotherapy will have to be done by family members. Even with home care nurses, visit usually every 2 weeks.

I am so sorry. I wish i had better news.

2 weeks on

Every Sunday feels like reliving a nightmare all over again. it's been 2 weeks and we have started discussing long term palliative care for you, Man. Painful decisions had to be made but do know that whatever it is, we will make sure that you get the best care okay.

I hope you can hear our prayers. I cried so much for the past 2 days but I promise I'll be stronger for you.

Ardani Aiman bin Mohamed

And this page remains unwritten...

I thought I've gone through the darkest days of my life but 12 July is the worst day of my life.

Wake up soon baby brother. Kak Amy is waiting for you. We all are.