Friday, January 29, 2016

My Supermom VS Stevens-Johnson Syndrome

It all started from her bad cough.

My mom had been coughing for months and nothing seemed to help. And one day, heard from my pharmacist friend that there's a pretty well-known traditional Chinese doctor (you know, the tongue and pulse examination) in Miri who had helped her friend and also her family members in various type of disease. Therefore I brought my mom to this Chinese doctor along with Bobby.

The three of us all had a pleasant visit to the doctor as she could straightaway state our physical conditions and later prescribed with different batches of medicinals (decoction of several substances). And so we all went home and everything seemed fine until one day...

The rashes began... 

Around two weeks after the visit, my mom had fever and she felt better after taking medicine. Just when we thought she's recovering, the fever came back again. The rashes first developed on her tummy, we all thought it was winter rash because she just came back from Hong Kong that time and she said it was very cold to her. But the rashes spread real quickly. Not only her tummy, her limbs, her face and all over her body.

We went to the KB hospital and the doctor thought it wasn't anything serious and only prescribed Aqueous cream and medicines to treat itching. The doctor said "give some time" and if it's still there, come back NEXT WEEK. That was on Monday,4th of January.

But rashes didn't get any better. Instead... it got worse and turned into widespread purplish skin rash with blisters. We knew we had to go for another doctor for another diagnosis.

Can you see the big blister on her ankle? It was about 6cm in diameter, almost like a hanging water balloon.
And that was not the only blister.

My mom had always preferred Seria clinic because the doctors and nurses there are much nicer and patient. Not to mention, less crowd too.We didn't wait for a week (siao meh! like this wait pi ah) and went to Seria clinic on Wednesday, also to take her annual blood test result.

When the nurse checked my mom's blood pressure and temperature, she saw the rash and blisters and said, "Auntie... I think you drug allergy. Sakit kah? Kasian auntie.."

I had a light-bulb moment after hearing that and thought.. could it be the Chinese medicines?

The nurse was really kind and took as many information as she could and wrote it in my mom's file and quickly sent to the doctor.

The doctor read what the nurse wrote, asked some questions and I also tried to feed him as much info as I can to find the possible causes and examined my mom's rash. He heaved a deep sigh and I knew it's not going to be something I wanted to hear.

"This is a very bad reaction and I suspect she has Stevens-Johnson Syndrome. I'm going to give her some steroids and see how it goes. If the rashes don't subside, we will have to hospitalize her."

"Steroids? So does it mean after taking steroids she will recover very soon? Does she need to take another blood test?"

"Blood test won't help her for now. We need to make sure this rash doesn't get any worse. This is not a small issue. Come back on Saturday and we will decide if she needs to be hospitalized." , the doctor said with a low stern voice. 

I had to translate what the doctor said to my mom, at the same time, I left out some part because I didn't want to scare her.

While waiting for the prescription (Prednisone, 40mg a day *cries* and antibiotic cream), I took out my phone and did a quick search on Stevens-Johnson Syndrome, the more I read, the more I freaked out. Life-threatening complications, blindness, damage to internal organs and permanent skin damage.

It was like the longest three days of my life to wait till Saturday. I slept in my mom's room to take care of her and there was few times I found myself just sitting on the mattress on the floor, looked at my mom just to ensure that she's breathing, then cried uncontrollably to sleep. That's how paranoid I became. I asked her a lot of questions everyday like, do you have sorethroat? Where else pain?! Please don't lie to me and pretend you're fine. Quick tell me where else pain? Can you see clearly? Got blurred vision? Got ulcers inside your mouth or not? And examined her face, her ears, her scalp, her hands and legs, and everywhere else to check for if there's any new rash or blister, or the rash subsiding.

She didn't quite get why was I so in such distress.

Despite of not being able to walk properly due to the blisters around both her ankles, she still remained very very active and had no intention of reducing her workload. I knew I couldn't stop her so I came up with a better idea, I followed her everywhere. I was her driver, her assistant (funny how a cleaner also can have an assistant), her nanny, her cook, her everything. It was the busiest week ever. She coughed, I woke up and checked on her. She went to the toilet, I waited. If we're at home, she would be lying on the couch watching television whereas I would be the one doing all the chores, cooking, sweeping, mopping, laundry, making sure she drank enough water and took all her meds.

And by 8.00 to 8.30am, I would drive her out for breakfast, tapao-ed for this old granny (I also don't understand why this granny only wants bazhang and kopi-c from Wing Soon) and sent the breakfast to her EVERYDAY except Sunday, picked up her other ladyboss from home and sent her to work, went to her work place and I did most of  the heavy job and she did the lighter chores). Cooked lunch, sometimes we need to go to Seria to pick up dirty laundry and a lot lah.... I had no idea how busy my mom was until I was in her shoes for almost the entire month. I told her that being with her these few weeks reminded me of the days when I was young and followed her to her workplace and do the easier job. Just that now tabalik, I'm the one driving her around and doing the heavier job.

Helping her with her work was not the hardest part of this whole SJS saga, what I hated most was the reaction of some people upon seeing her "rotten skin".

We encountered:

- stupid people who thought it was a contagious skin disease and refused my mom to enter the house.

- keh kiang aunties who think they are better than doctor, with conversations like this,
Aiyoo! What happened to you? I know lah, you chicken pox / measles / hives
I tell you what, you must take the xxx plant and shower /  eat xxx medicine / sleep on the magical mattress that can cures everything *roll eyes*
Basically, it's pointless to explain to these type of people because they chose to believe what they want to. My mom told them it was drug allergy and they still insisted on their "analysis". Most of the time I will keep quiet and roll my eyes 1000 rpm in my heart, but when I was in a bad mood or I really disliked that particular person, I will talk back and said, "Wah auntie/uncle, I didn't know you are a doctor! Stupid also those doctors study for so many years while you one glance already know what happened."
- The "You eat crabs / prawns / sotong is it? Last time I also like that you know, then I blah blah blah blah" - Er, no, my mom is a vegetarian you idiot.

-  Worst of all, "Eh, I think you kana "dirty thing", go see bomoh better ok". We explained again it's drug allergy and guess what, another random auntie came along and asked what happened to my mom, the si-pandai, in front of us, told the auntie "She kana dirty thing". Someone please hand me my gun.

安娣s 的耳朵做么酱硬的哈?

 Sorry, I had digressed a little.

Her skin clearing up. No more purple toes!

 After few days of taking the Prednisone, the rash and blisters subsided and my mom's skin was finally clearing up. The big blisters around her ankles looked like a deflated water balloon, wrinkly yet still with fluid inside. We went back to Seria clinic for review on 09/01/2016 and the doctor told us since the blisters were drying up, rash subsided, she won't need to be hospitalized, but she need to go to the skin clinic in KB to consult to taper down the steroid dose and set us up an appointment 10 days later (19/01/2016) .Just when we thought everything will be fine, came another issue. Fluid leaked out from the blisters and didn't quite heal up. Because both her ankles hurt so badly when the skin was stretched around that area, she couldn't even stand up straight not to mention walking properly.

Back to Seria clinic for dressing a week later (16/01/2016)

The nurse told us that the wounds need to be cleaned and dressed daily until it dried up to avoid infection. And so, I had to bring my mom to clinic everyday and at the same time, learned how to do it myself so I can do it at home for her when needed. It was heartbreaking to see my mom in so much pain when the nurse removed the bandage and cleaned it with antiseptic solution. I could see her shaking while anticipating the pain. Yet she still tried her best to smile and kasian the nurse if she knew they were so busy that they had not eaten their breakfast.

When my mom wore the above shirt to KB hospital (because Seria clinic is closed on Sunday, we need to go to the women ward for dressing), the nurse asked if my mom is hospitalized because she was wearing the patient clothing. And then we noticed, ya hor, Brunei government hospitals' patient clothing for women is red and white mini checkered shirt with a red sarong. Hhahhahahahaa.

Soiled bandage = Extreme pain later....

Woke up one morning only to find her watering her beloved plants downstairs. 就是不可以乖乖休息的

She insisted in preparing dinner and took the chair into the kitchen. Don't worry, she only washed the vegetables and I did all the cooking.
The stuffs I got from the clinic to do dressing at home.

Yay, almost back to the original state.
Except for the "world map" at the back of the ankle. Can you imagine how bad it was before?

I'm glad that my mom has always been a very positive person and she strongly believe that she will be fine even when she was in pain.She tried her best to avoid negative people because nothing good comes out from their mouths, such as, "This time ok, who knows when will this happens again?" *CHOI!* and only surrounded herself with the positive people who tells her that she is recovering well. She assured everyone that she's getting better and better day by day and joked that she has new skin for new year. Beh tahan her really. And the good news is, not only her blood test and urine test come back with everything ok (no damage to the liver and kidney), her bad cough is gone and also she hears better now!

My supermom in her "baju hospital"

Huge thanks to all the kind doctors and nurses who helped us on this. I heard so many bad comments about government hospital staffs but really, those we encountered were so patient and nice! (With one or two exception) My mom and I believe that if you treat people with respects and kindness, they will be good to you too.


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