The Agony of Stevens Johnson Syndrome

For someone that has never gotten admitted for anything except for delivery, this year, somehow I have managed to set a record for myself for being admitted into the hospital for 3 times in less than 6 months!

It started somewhere in June this year, where I was admitted for ectopic pregnancy. And then, just after Raya in September, I had middle ear effusion, which required a surgery and a course of antibiotics. And just when I thought I am done with hospital, I was again tested with Stevens Johnsons Syndrome, a severe allergy reaction towards medication that required immediate medical attention.

It started one day, when I woke up with burnt feeling on the tip of my tongue. I ignored it and went to work anyways. At work, I tasted some of the chocs and chips that my colleagues brought back from London, and my throat actually burnt this time when I tasted one of the dark chocolates. I stopped taking them and drank lots of water instead.

At home, my eyes started feeling dry and they were bloodshot red after some time. I went to work with shades the next day anyway, thinking they were just strained and would get better after a while. They didn't, and I asked to be excused early to see a doctor.

I travelled to HUKM and went to see my sister doctor. After examining me, her diagnosis for me was severe viral infection as the symptoms then were not as obvious.

However, the next day, my condition got worse. My lips got swollen with a few blisters on it, and rashes started to appear on my body. I MMS-ed my sister my swolen lips picture, and just one look at it, she told me to get myself admitted immrdiately as it was confirmed to be Stevens Johnsons Syndrome, not viral infection as diagnosed earlier.

By then, I had multiple ulcers all over my throat, my tongue, my gum, and my lips. Basically, the ulcers were all over my mouth. Swallowing was painful, let alone talking and eating. More and more rashes started to come out all over my body, and my vision started to become a little blurry too due to this. It was really frightening!

Rashes that started at my palm, then spread to the rest of the part of my body

Did you know that Stevens Johnsons Syndrome is one of the deadliest sickness with high death rates? You can read more about it here. Lucky for me, mine was detected early and isn't as serious. I was given some steroids to supress more blisters from coming out and some oral anticeptic during this time. The worse thing is, I was told that it would take 1-2 weeks for me to fully recover! Can you imagine the depression I felt having to know that I would have to endure the agonizing pain for more than a week? :(

Some of the relatives that came to visit me at the hospital. Thanks for coming, guys! :)

As talking was impossible during this time, the only means of communication was just writing and sign languages. Bunyik yang keluar pon bunyik intonasi je, cakap dah macam orang bisu. Tapi nasib baiklah Aien paham most of what I tried to tell him! Seriously, I was really impressed!

When it comes to food intake, doctor said I do not have to be on drip if I can eat and drink well. As such, I forced myself to eat, no matter how painful it was, just so I could get better faster. Mealtime was no more fun, every mouthful is painful. And the worse part is, all that I could eat then was just porridge -- for every single meal! Of course, if you call it eating la, sebab I dont even taste the food. Main telan je semua. I was so sick of taking porridge everytime, that I actually burst into tears when I opened the bowl covers and saw porridge yet again!

Anyway, after 2 days of being admitted, the doctor was confident that I was able to look after myself at home and allowed me to go home. Before leaving the room, the doctor told me to be ready as my condition would get worse before it gets better for the next few days.

She was right. After a few days, more rashes started coming out all over my body, my blurry vision still not making much of a difference and my lips.. well, if I didn't know better, I'd think that this was some sort of uncurable weird desease! They went from swollen, to gory looking lips!

Brace yourself, as I am about to show you the Stevens Johnson Syndrome's healing process. It's going to look nasty as you scroll lower, so if you're the type that get disgusted easily, you might want to skip this part.

Now the picture that you see above, is the condition of my lips at the peak of its state. They turn black due to the blood + dead cells. As the healing process starts to kick in, new skins start to develop.. and here's how my lips looked like..

During this time, my bestfriend was Vaseline as I applied it a lot to keep my lips from sticking together as well as to keep them moisturized. Ice cream helped to ease the discomfort in the mouth too. It is also important for one to not pick on the scab, because when it peels, it bleeds, and the scab will form again.

Despite all this, my sister said I was lucky, because for some serious SJS cases, one could expect blisters and lesions like this to spread all over AND inside the body, which could ultimately lead to death! I cannot, CANNOT imagine if THAT were to happen to me! T_T For that, I would like to thank her, who was quick to detect my illness and for being there for me during that difficult time. You've always been there for me, sister, and I can't thank you enough! <3

Anyway, after about a week, the rashes at my body started to dissappear, and my vision started to go back to normal. My lips, however, took 2 full weeks to recover.

It seems that the culprit seemed to be the antibiotic I took after my ear surgery. I have never had any allergy reaction towards medication before and it is very unfortunate that I had to find out about this the hard way! Nevertheless, I learnt a lot from this episode and one of them being -- never go easy on ANY medicines. Always be cautious on what goes into your system, because really, it really isn't funny anymore when you cant talk or see!

- Posted using BlogPress from my iPhone

The Day I Lost My Baby from Ectopic Pregnancy

I had my weekend all planned out last week. I was supposed to go to Johor to send my baju for tailoring, and attend the Nuffnang Trudy & Teddy Tea Party event to meet all the mommy bloggers right after I get back from Johor. Little did I know that God had other plans for me.

Last Friday started off like any normal days. I went to work, did my work like usual, even had quite a ball at the office as we celebrated our boss's advanced birthday at the office. Nothing was amiss.


But then just before I left the office, I felt the need to answer nature's call and that's when I noticed a little spotting. Since my Aunt Flow did not come and visit me the month before, I assumed she was just late and finally came to visit me that month. Oh hello there, I thought happily. Datang jugak kamu ye.

However, as soon as I reached home, the pain that I thought was just menstrual pain slowly kicked in. Mula-mula, it felt like normal menstrual cramps. Tapi, lama-lama makin sakit. Lagi tahan, lagi sakit.

When the pain got severe, I started popping the pain killers, still thinking it was a bad case of menstrual pain. At this point, I actually thought to myself, "oh macam gini la kot rasanya bila some of my friends cakap segugut diorang segugut yang amat dahsyat".

But when the pain killers didn't work and the pain started to become unbearable, I started crying. No kidding, I started sobbing like a little girl! I needed a stronger pain killer and asked my husband to take me to the nearest clinic.

When we reached the clinic, the lady doctor told us that she could not just simply give me a jab to ease my pain. She had to rule out all the possible threats that were causing me the pain. She mentioned that the pain could be due to UTI (Urinary Tract Infection), muscle pain or threatened abortion (miscarriage).

I told the doctor, it was impossible for me to be pregnant because I just did the pregnancy test about 2 weeks before and it came out negative. The doctor insisted for a second test just to double confirm and the next thing I knew, the result stood right in front of me.

I was pregnant... and speechless. I can't actually describe how I felt then, but I am sure it was a mixture of confusion, happiness and fear. Out of worry for my safety, the doctor advised me to see a specialist immediately for further examination. And that was when everything started.


As soon as we reached Sime Darby Medical Centre, we asked for Dr Delaila since she was the same specialist that delivered Aydein. After examining and performing a scan on me, she said that she couldn't see any fetus in my uterus which could mean early pregnancy, miscarriage or ectopic pregnancy.


I didn't want to say it out loud, but deep down inside, I could feel that I was suffering from ectopic pregnancy. I knew because the intense pain was coming from one side only and it was throbbing.

Aien on the other hand, was being all positive about it. He kept on reassuring me that everything would be fine and that whatever the result may be the next morning, I was to keep an open mind about it and to accept it with open heart.

That night, I could not sleep because the pain was so painful, it made sleeping impossible! I spoke to my unborn baby, I told her to be strong. I told her I loved her, I told her to fight her way through. I told her if she were to make it, she would get to see her brother, and her papa. And somehow, the pain got better after that, and I was able to get a few hours of sleep.

The next morning, the moment I've been dreading for finally came. The doctor told me that the blood result confirmed that I was suffering from ectopic pregnancy and that the fetus had to be removed immediately to avoid complications. At that point, I felt my heart constricted. I felt as though I was crushed. In moments, I would be brought to the operation theatre. In moments, I would lose my baby.

Tears started to trickle down my cheeks as soon as the doctor left our ward. Aien kissed my forehead and told me it was going to be okay, that it was meant to be, and that I should stay strong. I guess Aydein could feel my remorse too, because he behaved really well throughout our stay in the hospital.

I was told to fast for at least 6 hours prior to the operation. During the waiting period, I had so many things in my mind. What if I stay awake after they sedated me? What if I stay unconscious after the anesthetic wears off? What if something goes wrong and I lose a lot of blood during the operation?

This was when I started feeling frightened and extremely down. But thanks to the support and words of encouragement from all my friends, my spirit started to lift up once again.


And then, it was time. I kept on reciting prayers on the way to the operation theatre and also the kalimah syahadah just before they sedated me.


And in less than 10 secs after they put the gas on me, I knocked off. The 1 ½ hours operation went well, alhamdulillah, because the next thing I knew, it was over, and the nurse showed me the fetus that was taken out from me. The fetus was still in the form of blood clot about the size of a red bean.


I just nodded but didn't say anything because I was still drowsy from the anesthetic. Once I was stable, I was brought back to my ward, to the smiling faces of my family.

And despite the pain from surgery, I thought to myself, O Allah, thank you for giving me the chance to breathe in the air one more time and to be able to see and appreciate the people that I care most about in life, even better. Verily, with every difficulty, there is relief.

Hello Mr Nebulizer, We Meet Again.

I am not sure if you knew, but recently, papa was admitted to Tropicana Medical Centre for upper respiratory system infection. He was coughing badly and was in a bad state of health that we had no choice but to admit him to the hospital for close monitoring and care.


About the same time, I was coughing badly myself. Mama suspected I might have gotten the bug from papa so she took me to the clinic nearby and I got better after a few sessions of nebulizer treatment.

However, after 2 weeks, the attack came again. I started coughing badly again and it got so severe that even a few sessions of nebulizer treatment weren't doing any good to me. I was still coughing badly, my breathing was harsh and chesty, and I had a lot of phlegm in my lungs. Suspecting that it is acute bronchiolitis infection, the doctor immediately wrote a referral letter and I was admitted to Sime Darby Medical Centre.


Here, I am monitored very closely. Believe it or not, I have to take the nebulizer treatment every 3 hourly! I used to hate Mr Nebulizer so much. But now, we are so buddy-buddy, I can even smile and giggle during the session. Heck, sometimes I even sleep during the session!


I do miss home, though. Although the friendly nurses here keep bringing me delicious food, I hardly eat them. I miss home cooked food! Luckily mama brought me something from home to keep me company. They're my friends Cookie Pot, Choo Choo Train and Speedy Car!


Not only that, I also received a surprise get-well-soon gift from my cousin Farah. Look what she got for me!


Sweet, isn't she? :) Oh, good news! The doctor swung by this morning and she said that I am getting much, much better. Although the phlegm is still there (it takes 2-3 weeks to clear off) but at least the wheezing is gone. The best thing is, she said I can go home today!

Thanks all for all your prayers and support! I love yous!


- Posted using BlogPress from my iPhone

Mr Nebulizer and Aydein

The one thing about kids socializing with each other is that, they tend to pick up a lot of things from each other. They learned new skill from each other, they try to copy or imitate each other, and for Aydein's case, they also pickup bugs or viruses from each other.

It feels just like yesterday since the last time Aydein fell sick. And recently, he seemed to have caught one of those bad bugs that caused him to cough badly. He's been coughing so bad, that phlegm started to block his airways and there's even wheezing sound coming out from inside his body, like an asthmatic person.

I initially thought that it would go away. But after a few days, it got even worse that I had to ask my sister doctor to come over and examine him. My sister told me Aydein's condition is pretty worrying and that he needed medical attention asap. And since she didn't have with her all the right equipments then, we were once again forced to bring him to the nearest hospital, so the first thing that came to mind was, SJMC.



Just after subuh yesterday, we went straight to the doctor and Aydein was diagnosed with Bronchiolitis, not Asthma. More about Bronchiolitis here. He said that the only way Aydein could have gotten this is from other kids around his age. It seems that it is rare for adults to transmit this virus so I'm guessing that he caught this from one of his cousins that he saw recently.

Poor baby had to be on nebulizer in order to get his airways cleared. He cried very badly. Very, very badly like I've never heard before. He was so very upset that he was forced to wear the mask and inhale the gas. He tried to struggle out of it, but we managed to hold him back. He cried and cried, and paid no interest even when we played his favorite Barney clip from his dad's phone.


Later that night, we brought him to see another doctor again the very same night, because he was not getting any better. This time, we went to Menara Clinic to see our regular Dr Alan instead, because we weren't very happy with the service given by the doctor we saw earlier in SJMC. Aydein was given another dose of nebulizer gas. That was when we know, how strong -- really strong, this boy is.

He pushed his body forward, wriggled left to right, just to free himself from the mask while crying out really, really loud. He was really strong, that he even managed to get out from Aien's grip and snatched the mask off his face. And when Aien held him back and I put the mask back on his face, he cried on top of his lungs and looked at me with that pleading look at his eyes. I felt really sorry for him, but I had to pull myself together, knowing that this is the best for him.

And this morning, we went to Menara Clinic again to follow up. Aydein has gotten much, much better since last night. There was very little wheezes, that the doctor felt that it was not necessary to put him on nebulizer anymore.

Aydein tired from crying

He advised that we come again tonight for checkup though just in case, because it tends to get cold at night and that's when the attack usually happens. Let's pray that Aydein recovers fast so there is no need for him to see Mr Nebulizer no more -- and save his tears.

The Sickly Boy

I used to wonder how it would be like if Aydein were to really fall sick. As far as I can recall, Aydein hardly got hit by the temperature since the day he was born. The only time he experienced a mild temperature was when he was really young, about 3 or 4 months, due to the jab. Even the recent MMRV jab that he got last month did not cause any fever on him. That is why, when he fell sick since the past 2 days, I got worried sick!


Aien and I were in the car on our way back from the office when I received a call from home at about 8.30pm. We were informed that Aydein has a mild temperature since morning. Aien drove as fast as he could, and reached home to find Aydein temperature hitting 38.5°! We were also informed that Aydein has been vomiting twice since morning. Without hesitating, we went to the Menara Clinic. Dr. Alan mentioned that it was just viral infection and prescribed some medicines for Aydein to take.

The next day, I worked from home just to monitor Aydein's temperature. His fever come and go. At times it's 38.5°, at times it's 38°. But last night, when it hit 39°, I had no choice but to wake Aien up, and with his help, inserted the Voren medicine from Aydein's back, stripped Aydein off his clothes, took him into the shower and bathe him with the cold pipe water at 3am in the morning! Aydein cried, and cried, and shivered the whole time! And although it broke my heart to see him like that, I knew it was just the right thing to do to bring his temperature down as to avoid him from getting fit.

After drying him up and leaving him bare with just the diaper on, I asked Aien to go back to sleep. Then, I tried to put Aydein back to sleep by letting him to suckle on me. The moment his tongue touched my you-know-what, I could feel the heat from his body. I could not fall back to sleep, worrying if the temperature would fluctuate again. So I got up back again, looked for a fresh clean handkerchief, and started "sponging" him. Yes, I know now what tepid-sponging is! Or at least, I think that is what it is!

Anyway, Aydein HATED the sponging course! He cried the moment I put the wet cloth on his body. In order to comfort him, I did the only thing that I could think of. I let him suckle on me while I sponge him. After a while, it got so tiresome to fight, so he dozed off anyways. His temperature was much better after that, 36.4° to be exact, that I was confident to go back to sleep again, only at 5am.

The sickly boy who lost weight rapidly only after 2 consecutive days of fever :(

Earlier today, Aydein's temperature got back up again. But since it was just a mild one, I just gave him a shot of PCM and continued to sponge him. As expected, he cried his lungs out again!

But after a few coaxing, he was back to his normal smiley self again, and allowed me to gently sponge him with the occasional "ehek ehek". I believe that's just him being manja. :P

I thank Allah though, Aydein is such a good boy. Although I find him slightly clingy on me during this time, however, I can hardly find him whining or crying unnecessarily. He eats and drinks normally and still try to smile and laugh and make his funny faces asthough trying to tell me, don't worry mama, i'll be alright. :)

Aydein wrapped in a wet towel to bring down the temperature

I shall pray that you will be alright soon, dear. I love you too much!

To Baby Ammar's Aid

Tears welled up in my eyes as soon as I finished reading Nuffnang's special featured entry on a toddler named Ammar.


See the lovable, adorable, normal-looking toddler in the picture above? One look at this cheerful little toddler, no one would have guessed that this toddler has been struggling with a heart condition since birth.

As of now, this adorable, innocent little fellow is patiently waiting for 22nd February 2010 where he will be taken to an operation theatre for a heart surgery.

FYI, Ammar is a 2-year-old toddler who has been suffering with Patent Ductus Arteriosus (PDA) since birth. According to Nuffnang, he has a hole in his heart which results in oxygenated blood and non-oxygenated blood mixing together, which in turn puts a lot of strain on his heart and lung arteries. I think it is better known as jantung berlubang in Malay.

It seems that in some cases, the hole eventually seals itself up after some time, but that wasn't the case for Ammar as doctors mutually agreed that he should undergo a surgery to prevent the situation from getting worse.

Hospital is his second home. Going in and out of ward becomes a routine for this poor family. You can check out this blog entry written by his mom, Azmaniza, who blogs at http://mylife-asz.blogspot.com, to read more about Baby Ammar's condition and how she, a mother of five children, brave through this God's greatest challenge.

Honestly, I can't imagine myself being in her shoes. I can't imagine what I would do if it were to happen to me, or to Aydein. I can't even imagine how it must be like for the little toddler to have to breathe through breathing aids ...


and eat through gastro tubes, at a very tender age!


With that being said, I urge ALL of you; If you have some time or love to spare, please help this innocent little boy, who may not even have any idea of how serious this condition could be for him. It is obvious that he is oblivious about this, because he could still offer a smile at times like this even when he's obviously ill. Sighs.


Please help to spread this word around. Donations can be made to Azmaniza Mohamad Kamal – 514093114912 (Maybank). Every little bit helps, so please do contribute any amount you can.

Again, baby Ammar's surgery is scheduled for 22 February 2010, and the fund-raising effort will end on midnight at 17 February 2010. It is indeed a short period of time, but let us all rise to the occasion and prove to everyone the strength of a blogging community like ours.

Remember, today might be her day. We never know when it could happen to us. :(

To baby Ammar, get well soon, baby Ammar love! To his family, be strong and keep praying. Insyaallah this misery will soon come to an end and replaced with a happy ending soon, insyaallah.

Bad, Bad Diarrhea

Aydein sweetheart,

Did you know that you got mama and papa worried sick a few days back?

You see, one day, when I came back from work, bibik informed me that you have been poo-pooing for about 5 times while I was at work. And later that night, you poo-pooed again for another 3 times, making it 8 times altogether that you poo-pooed for that day. This was very unusual, but I thought it was maybe something that I ate the night before that caused your unusual bowel movement. So I waited for another day to see if there were any changes in your bowel movement while avoiding any spicy food.

But then you didn't get any better, baby. In fact you got worse. I was going to change your diaper after you had your last bowel movement when you flushed out water out of you yet again. That was when I knew you had diarrhea. Your bum-bum was getting very red and sore from your frequent bowel movement too and it broke mama's heart to see you in pain everytime I touched the swollen area to clean you. Bad, bad, diarrhea.

I could not bear to see you in pain any longer so I took you to see your doctor the first thing in the morning as she prescribed some medicine for you to take.


She also told me to stop your formula for 2 days and in replacement, she asked me to feed you with rice water..


and loads and loads of oral rehydration salt (ORS) solution instead. I was very glad though, that you were able to take the two foreign solutions into you. And I think the ORS solution was quite nice too, because you seemed to like it very much and finished the 6oz I prepared for you. :)


But even then, no milk for 2 days? Poor you. :( But it was not all that bad, was it baby? After all you still had me to feed you my own delicious milk kan! :)

Did you know though, that you are such a strong boy? Although we knew you were going through a rough time fighting with your tummy ache, you did not make a scene, whine or fuss at all. You were just your usual self, smiling and laughing away everytime we played with you. We're so proud of you, sweetheart and we thank Allah that you're now well and healthy now. :)

Oh, look at the time! Mama needs to rush to the kitchen to cook dinner now before papa gets hungry. Until then sweetheart :)

Love love,
Mama.

My Other Half & The IV Drip

SJMC (now known as SDHC - Sime Darby Health Care) is practically my second home since I was 7 months pregnant. I had my monthly maternity checkup there, I delivered my baby there, and I still go there every month for Aydein's monthly checkup. Haish. Kaya SJMC dengan duit aku. :P

Last week's visit to SJMC however, was not very pleasant. It was the second time in 2 months that Aien, my other half, got admitted to a hospital for the same heath problem – the dreadful DKA. DKA which stands for diabetic ketoacidosis, is really one of the life-threatening illnesses.


I remember the first time it happened. It was last Ramadhan. He complained of feeling nauseated and could not accept anything into his tummy during breakfast. He took a bite of bread, he vomited. He drank a few gulps of water, he vomited. Suspecting it was just gastric, I brought him to a nearby clinic. Only then that we realized it was his sugar that was the culprit. It was 18! (In case you don't already know, normal sugar level in a normal individual is about 4 – 7)

Even after taking the insulin like he always does, the vomiting would not stop. In fact, it became even worse. He began to vomit excessively. I was beginning to get worried so I called my sister doctor. She suspected almost immediately that it was DKA and told me to admit Aien to the hospital asap or he could collapse. Aien was admitted to HDU (High Dependency Unit) in Sunway Medical Centre.


Last week, it all happened again when Aien missed his night (insulin) shot. I witnessed the same thing happening just 2 months back – the nausea, the loss of appetite, the vomiting and the weakening of the body. Without hesitating this time, I admitted him to SJMC.

Just as before, his ketone was 4+ and his blood was infected and acidic. It was very traumatizing for him to go through the dreadful experience of the needles pricking through his skins once again, so I stayed back to spend the night in the hospital with him just to boost his spirit. He was treated with loads of IV drip that kept him hydrated and antibiotic to fight off the infection.


And thanks to all the well wishes and prayers from friends and families,

Aien got discharged after 3 days of thorough monitoring from the healthcare professionals. Thanks all again for all your support. :)