arachnoid cyst part 4 – the surgery

06.01.2013 Day -1 — pre-surgery admission

it was a sunday and the admissions office was open for half a day only. so we admitted mupig at 12noon. he immediately became very popular with the nurses because when they were drawing his blood for the various tests, he did not cry and was very cooperative. i was pretty impressed too. the last time both of them had to be put on IV drip, they cried and screamed like little piglets about to be slaughtered and made into roasted suckling pigs.. hahaha..

for his bravery, mupig earned a load of stickers from the nurses!

naturally he was very happy. and since he was in such a good mood, his appetite was really good too. so good that he didn’t want to go to bed at night because he wanted to eat all the things.

knowing that we would be awake at 5.30am the next morning to prepare for the fast, i chased him into bed.

tb went home to sleep.

but both of us were so worried that we didn’t sleep ;__;

07.01.2013 Day 0 – surgery

today, a nurse came in at 5.30am. all intake of solid food should be done before 6am and mupig should stop any intake of clear fluids (water, apple juice, ribena etc) before 9am. tough, ne!

from then on it was waiting and waiting as we were told that the operation would be scheduled in the afternoon but nobody could tell us the exact time.

finally, we were led to the operating theatre (OT) just before 1pm.

i changed mupig into the surgery gown. he was wearing his cute thomas the train underwear inside 😀

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inside the OT, a cheerful team of anaesthetists worked on getting him to inhale the sleeping gas. they didn’t have to try very hard as he was so obedient that he fell asleep very soon.. 真是个头脑简单的家伙好孩子!

after he was knocked out, i gave him a long kiss on his cheek and left the OT unwillingly ;__;

i was already dead tired but when i lay down on the couch, i couldn’t sleep at all. it was terrible X'(

sometime at 4.30pm, a frantic nurse rushed in and removed mupig’s name tag from the bed. she said “your baby’s operation is over now and will be transferred to HD (high dependency). there is no need to stay in ICU. ”

i jumped up from the couch and she told me to go to the OT before dashing out of the room.

what?? we had been told (by the surgeon himself) that the surgery would take about 2-3 hours and the preparation, cleaning up, and setting up of ICU would take another 1-2 hours so we were naturally a bit confused that the surgery was over so fast. the most confusing thing was the surgeon also said that mupig would need to stay in ICU for at least 1-2 days. so it did seem a bit strange that he was being transferred to HD ward directly.

anyways, i rushed to the OT. i was so nervous that i could really feel my heart in my throat. i didn’t want my baby to wake up with a room full of strangers. he would naturally be scared and confused.

my heart sank when i reached the OT. the blur-as-sotong nurse had mistaken mupig (bed 04) for another baby (bed 09). she apologized to me and told me that mupig’s surgery was still in progress and advised me to wait for news back at the ward.

knnbccb

really disappointed.

at 5.30pm, i finally received a phone call from the OT!

i bumped into the surgeon (dr low) just outside the OT.

cJ: how is he? is he awake already?
dr low: yes, he was awake after the surgery. in fact, he was too awake. he couldn’t find you and was so agitated that he was thrashing things around. we had to sedate him again to calm him down.

the surgeon then told me that the surgery went very well and there was very little bleeding. *happiness*

a nurse at the OT brought me to the ICU and i saw my baby lying inside the cot. i didn’t take any pictures because he was damned scary to look at. his eyes were partially closed and his mouth was open and his breathing was very heavy.. i wanted to cry.

there were different tubes on his two arms, some measuring device on his toe, some stuff plastered on his body for dunno what measurement, and he had a catheter. the nurses tried to put diapers on him but they couldn’t find anything big enough so actually that was quite funny to look at.

the funniest thing was, one of the staff handed me his cute underwear in a sealed bag :’D

although we had planned to spend the night at the ICU, we were urged to go back. the nurse explained that visitors could only sit on the chair inside the ICU and were not allowed to sleep, so we would not be getting any rest. furthermore, there were many staff monitoring each patient round-the-clock so if there was a need, they would alert parents immediately. she also added that we should try to sleep more at home because the first few nights out of ICU would be the toughest for parents.

we were convinced by her and went home for the night.

i still could not sleep -__-

every time i closed my eyes, i would see my baby alone in the ICU.

what if he wakes up in the middle of the night and cannot find mummy?

08.01.2013 Tuesday – Day 1

couldn’t wait to see my mupig so i went to the hospital alone at 7-plus in the morning (fat X and junpig were still sleeping *roll eyes*).

when i reached the ICU, mupig was awake and watching some cartoon DVD but started crying when he saw me ;___;

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see how happy mupig was when he saw mummy <3

note that the head was actually bandaged properly after the surgery, but true to dr low’s words, the bandage did not last.. haha.. it came loose when mupig was sleeping and when he woke up he kept tugging at it, saying his head was itchy -__-

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check out his poor poor left arm. there was a tube in his arterial vein, one IV tube for morphine, and a bp monitor on his thumb TuT

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hence, he could only use his right hand to pick his nose — the right hand had only one tube for IV drip.

young man, don’t think i don’t know what you’re doing. mummy is always watching you!

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mupig appeared very comfortable throughout his stay in ICU because he was on morphine! hooray for kickass painkillers!

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the surgery scar was halfway across his head, pretty scary to look at, if you ask me..

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father and son watching cartoon DVD.. why do they have the same bored expression?

ok anyways mupig was doing pretty well (it’s because of the morphine, you see..) in the ICU and was able to eat some porridge at lunch time. dr low then gave us the green light to step down directly to a normal ward as he would not be able to rest properly in a HD ward. mupig was weaned off the morphine and the arterial line, catheter were also removed in the afternoon.

as the porters were taking forever to fetch us from the ICU, the super super awesome ICU nurses helped us wheel mupig back to his ward! i think this was a first for them :’D

we went back to the same ward at around 4.30pm. everything seemed ok until mupig started to vomit at dinner time ;__;

best thing was, he vomited all over me just after i had my shower X’D

i showered again and he vomited again. luckily he didn’t vomit on me the second time *phew*

in the same evening, we met this funny female doctor, who tried to touch mupig’s wound using her bare fingers while all of us watched in horror.. anyway, she turned out to be mupig’s greatest fangirl!

dr low came over and put the turban-like bandage on mupig’s head again. the bandage came off shortly after dr low left *sobs*

later that night, the female doctor dropped by and suggested putting bandage on mupig’s hands instead of his head. since the objective was to prevent him from scratching his wound, it didn’t matter where the bandage was applied.

clever girl.

fat X and i took turns sleeping that night. but we didn’t really get any sleep because the nurses came in every freaking hour to check on stuff.

blah..

09.01.2013 Wednesday – Day 2

mupig was tired the whole day. he would stay awake for a maximum of 30-60 minutes before requesting to go back to bed, where he would fall asleep without prompt.

the bruising and swelling of the right side of his face became more apparent today.

and because he slept so much in the day, he woke up every 15-30 minutes throughout the night and each time he woke up, i had to freaking climb into the cot and pacify him. this went on until like 7am in the morning and i seriously thought that i could just die from sheer exhaustion. but i didn’t lah.

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10.01.2013 Thursday – Day 3

mupig vomited again in the morning and refused to eat anything. as he kept complaining of mysterious pains and did not want to eat/drink anything, the doctor ordered for a CT scan. we managed to secure a slot at 10.30am.

the CT scan revealed that everything was normal, although there was some bruising at the site where the cyst was operated on. dr low explained that it was some pituitary gland and it would affect the stuff in the bloodstream so he ordered for a blood test to ensure that the stuff in mupig’s blood were normal. (i seriously cannot remember if it was some electrolytes or minerals or salt.. something like that lah.. now i can totally understand why my users keep referring to tinyMCE editor as tiny Mickey Mouse editor. there is no way i can remember all the terms the doctor told me so i guess it’s the same for poor IT users, hee hee..)

when explaining the CT scan results, dr low pointed out that inevitably, there would be some air trapped in the head after the surgery. this could cause the patient to become tired and sleepy easily.  also, due to the release of pressure from the cyst, mupig may experience some “low pressure headache” as he was used to having a high pressure in his head. for this, he would have to get used with it :S

the blood test result was good.

the problem was, our dear baby was still not eating/drinking and refused to go to the toilet. he only ate some fruit and one cup of steamed corn >m<

11.01.2013 Friday – Day 4

today, mupig woke at 9.45am and refused to eat anything again. he randomly requested for char siew pau so i put him in a car stroller and brought him downstairs, in search of the legendary char siew pau..

(i made the shocking discovery that one is unable to buy any char siew pau in KK Hospital! the closest thing they have is honey chicken pau)

dejected, we returned to the ward where mupig vomited all over the floor. for someone who ate so little, the amount of vomit he had was actually quite impressive. but now was not the time to rejoice over such things, so i quickly washed him up and fed him some strawberries and a few “Hello Panda” biscuits <– these would become his staple food in the next few days.

after “feasting” on the few strawberries and biscuits, his royal highness went back to sleep again, refusing to wake up for lunch.

at 3-plus in the afternoon, i forced him to eat some cherries and panda biscuits again. apparently, he was still eating too little and almost not drinking.. so the poor boy was put on the drip again in the evening.

at dinner time, he saw some noodles and sat up excitedly in bed. perhaps his movement was too abrupt, he only ate one strand of noodles before headache struck again. so he lay down in bed and went to sleep, without his dinner.

i couldn’t take it anymore and locked myself in the toilet to cry ;__;

why must such a young body endure this kind of stupid pain? people his age should experience pain from knocks and falls and canes, not from some stupid headache caused by changing pressures in the brain. *hate hate hate*

anyways, it was another sleepless night for me.. sometimes i really wonder why my children only call for me in the middle of the night…

12.01.2013 Saturday – Day 5

brought mupig downstairs for a morning stroll and little rascal refused to go back to the ward! when we went back to the ward, he refused to eat his breakfast. so fat X brought him downstairs for some McDonalds.

junpig didn’t have to go to school today so he came to the hospital for a visit!

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mupig and mummy smiling for a photo. i suppose that was a moment where he was not experiencing any headache :’)

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we took junpig with us when we went back for a shower. although we could shower in the hospital, it still felt better to have one at home 🙂

junpig was one happy little boy! he ate all the things that mupig refused to eat, and my in-laws brought him to Funan, where my mil bought 2 new iPads for the pigs and gave junpig a treat at his favourite restaurant (McDonalds lah, fast-food restaurant mah..)

mupig still ate very little today but i managed to convince the nurses to remove the IV line as the site was bleeding *heart pain*

13.01.2013 Sunday – Day 6

brought mupig for his routine morning stroll again.

also, mini men’s brand new iPads arrived!

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by now, mupig had lost quite a bit of weight and his ribs were really visible. why do children lose weight so easily? it’s really quite heart-breaking..

anyway, mupig’s weight loss made his twin brother look like a duah bui sai.. just check out the next picture..

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junpig acted like he was being ill-treated at home and in school. he couldn’t stop eating!

14.01.2013 Monday – Day 7

went for mupig’s routine morning stroll and breakfast at McDonalds. we reached the ward just as dr low was leaving to perform some surgery. he said he would like to monitor mupig for a few more days. typically, a patient would regain his appetite and behave normally on the 3rd or 4th day after surgery. however, in mupig’s case, his condition seemed to have worsened after the 3rd day and his behaviour (extreme lethargy) was also not exactly normal.

to improve mupig’s appetite, dr low ordered for him to be put on steroids.

15.01.2013 Tuesday – Day 8

the steroids worked so well that mupig ate non-stop!

dr low said we could go home anytime as long as we felt confident about it! actually, we would prefer to wait till his condition is more “stable”.

16.01.2013 Wednesday – Day 9

mupig had the symptoms of constipation and if he still had no output today, the nurses would have to insert a suppository to help him move his bowels. dr low thought that mupig might be feeling unhappy in the hospital day after day, he granted us “home leave”, meaning we could bring mupig out of the hospital for a few hours and come back in the evening!~

super smart me brought him home and guess what was the first thing he did when he came home? HE POOPED!

hooray!

when we went back to the hospital, dr low suggested scheduling an MRI on Friday before we discharge. however,  the nurses didn’t manage to secure a slot for mupig and the next available slot was on the following Tuesday.. nan dao we had to stay until next Tuesday just to wait for the MRI?

cannot be right..

17.01.2013 Thursday – Day 10

in the morning discussion with dr low, he agreed that it was not necessary for us to stay all the way until the following Tuesday just to do the MRI, as we could go home anytime we’re ready. fat X and i both decided that 18 Jan would be an auspicious date to get discharged from hospital.

actually no lah, we wanted to observe the effects of reducing the steroid dosage. we definitely do not want to deal with a child who refuse to eat anything after we get home, because you know lah, my home got no IV drip and stuff to replenish his nutrients..

18.01.2013 Friday – Day 11

mupig seemed to be behaving normally and eating well so we went home at 5pm! Hooray ~

19.01.2013 Saturday – Day 12

mupig was eating very well. in fact, he was eating so well that i was contemplating throwing away all the steroids!

check out his fat face below!~

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the brothers really enjoy each other’s company. sometimes i get jealous and wish i had my own twin brother..

SONY DSC

<3

 

a new beginning

it has been more than a week since we left the hospital.

when i tried to log in to my blog, i was a bit surprised to find a script error on the main page. i tried to access the wordpress login and was faced with the same script error.

puzzled but feeling confident that i could do some php debugging, i then logged in to the cpanel and didn’t find anything wrong (mainly because i know next to nothing about php). but when i clicked on the list of databases, a greater surprise greeted me.

my database was now 0 bytes.

HOLY FUCKING SHIT.

i was so disturbed that i couldn’t sleep.

i don’t blog for a living and this blog is definitely not my everything. but whenever i think of all the memories i so painstakingly put down into words over the last ten freaking years, i can’t help but feel a little sorry for myself.

records of adventures with imaginary friend — GONE.

photos and stories on travels with neo sister — GONE.

documentation on my first pregnancy — GONE.

my birth story — GONE.

all the cute things that mini men said — GONE.

pictures of things i’ve sewn and given away — GONE.

my private blog posts — ALL GONE!

well, shit happens. heh.

i discovered this shit on the 21st and the oldest archive the hosting company had was on the 19th. so i figure that there was really nothing we could do to restore the data.

so i just requested for the whole webhosting account to be reset (>m<)

i shall just treat this as a golden opportunity to start afresh..

じゃあ~ 今からも、よろしくね!

arachnoid cyst part 3 — what will happen during treatment

I managed to grab the text from google’s cached results, so I’m re-posting the entries on arachnoid cyst here.

Part 1
Part 2
Part 3

————————–

we met the neurosurgeon on 12 Dec to inform him our decision.

the surgeon had done some academic research on sen’s (extremely rare) case and there were only two documented cases of such large arachnoid cyst. both were adults in their 70s or 80s. like sen, the discovery of the cyst was incidental as these patients did not experience any symptoms at all.

sigh.. this actually caused further confusion for us. so people can live to a ripe old age with the cyst in their brain. what would happen if we go and disturb the cyst?

nevertheless, we had already made up our mind on this so there is no turning back now :’)

the surgeon briefed us on the treatment options available:

 

  1. fenestration – an open surgery where an open is created on the cyst wall to create a channel of communication. this allows the fluid from the cyst to be drained out gradually and get re-absorbed into the surroundings. this is the preferred method as it has the highest success rate.
  2. shunting – a simple surgical procedure to embed a device (shunt) to drain the fluid from the cyst. low risk but implant is prone to failure and there is tendency for the rate of draining to be too fast, resulting in complications.
  3. endoscopic cyst fenestration – a minimally invasive surgery where the cyst is opened up using an endoscope. like shunting, this is a simple procedure that is minimally-invasive and has a very short downtime, but it doesn’t come with any shunt-related complications. it also has the added advantage of high success rate like fenestration.

the surgeon’s preferred option was the first one. he would have favoured the endoscopic cyst fenestration but for sen’s case, the cyst is too big and having an open surgery would be a better option.

besides the normal surgical risks, the surgeon also has to watch out for the over-stretched optic nerve and many other nerves and blood vessels near the site where the cyst opening needs to be made. although the surgeon is very experienced and the structure of nerves and blood vessels is largely similar in normal people, sen sen’s case would be more challenging as the structure of his brain has been affected quite significantly due to the cyst.

after the 2-4 hour procedure, sen will spend a night or two in the ICU (Intensive-Care Unit). he will then proceed to stay in a HDU (High-Dependency Unit) for another 1-2 nights, depending on his recovery, before being transferred back to a normal ward, where he will spend another 7 nights or so. while the superficial wound would take about 2 weeks to heal, his skull may take 2 months or more to completely heal. after healing, there may be a permanent cavity in his head due to the shrinking cyst.. and so he will have to stay away from contact sports for the rest of his life. i am fine with it, as long as he is safe and healthy :’D

anyway, after the long discussion with the surgeon, we went for a “counselling session” where the hospital staff gave us some briefing on what to prepare for the surgery, and how deep we need to dig into our pockets to finance the treatment, among other things.

it was such a loooong day for us..

how i am coping so far

work has been keeping me busy in the last few weeks and thankfully this means that my mind is too pre-occupied to have any negative thoughts or unnecessary fears.

yes, shit happens.

but i certainly hope it doesn’t happen to my baby.

please take a minute to pray for my precious..

arachnoid cyst part 2 — making the decision

I managed to grab the text from google’s cached results, so I’m re-posting the entries on arachnoid cyst here.

Part 1
Part 2
Part 3

————————–

so we are now aware that there is a 17cm cyst in sen sen’s head.

the MRI image shows a large white mass (brain fluid) on the right of his skull and while normal brains appear somewhat symmetrical, his looks kinda scary as the centre line of the brain is shifted to the left and his right brain is so squashed that some parts look like tiny strips of bacon :S

apparently, this is a chronic problem. the cyst must have grown at a rather slow rate over the last three years as sen does not seem to be displaying any symptoms at all. i.e. he does not seem to be in pain, he does not have seizures, his motor skills are fine, and his learning abilities and speech development are normal. most importantly, although his right brain seems to be badly affected, it does not seem to affect him at all. since he is so young, his body probably compensated by utilizing other parts of the brain for learning the basic skills :’D

in fact, if the same condition happened in an older child or an adult, the person would be paralysed or lose some functions associated with the affected areas in the brain.

i was actually damned impressed by the fact that he was totally unaffected by the abnormally large cyst in his brain. so  i told myself “wow, he is considered quite smart (by the school teachers) even with the right brain squashed into a strip, i think if his brain were to develop normally he’d definitely be a genius!

i am really thankful for the miracle. i am thankful that his quality of life is not affected by the cyst. i am thankful that his development is not affected by the cyst. i am thankful that he is not suffering from severe headaches. i am thankful that despite having his optic nerve stretched by the cyst, his vision is as perfect as can be. most importantly, i am thankful that he is safe and well.

but this adds to our dilemma.

if everything is in harmony, what is going to happen when we operate on him and disturb the perfect balance in his head? how will his brain react to the shrinking cyst?

if the cyst was causing him pain and seizures, or affecting his eyesight, physical movement, or intellectual development, then it would be a no-brainer. i.e. we should definitely opt for treatment.

but no, this boy is living a normal life despite this condition and who knows what we’re messing with by operating on him? even the surgeon could not give us a definite answer.

so we were given about three weeks to make a decision.

it was indeed difficult.

some people believed that children should not be operated on. they advised us to try alternative treatments or go for miracle prayer sessions.

others believed that the condition should be treated while the child is still young, because taking time off from school when he is older would be disruptive to his studies. i’m sure you can tell that this advice came from a kiasu singaporean parent :p

leaving the cyst alone was akin to leaving a time-bomb in my child’s head. i am constantly worried that it might explode. i even have nightmares about it. NOT FUN.

on the other hand, if we start to treat him, his right brain will grow back to occupy the cavity vacated by the cyst, and i can verify my hypothesis of him being a genius if his brain is fully-developed :’D

so we decided to let him go for operation lor..

arachnoid cyst part 1 — what the fuck?

I managed to grab the text from google’s cached results, so I’m re-posting the entries on arachnoid cyst here.

Part 1
Part 2
Part 3

————————–

on 18 Nov, we warded sen into the hospital in preparation for his MRI on the next day.

having endured the pains of a shared ward in a children’s hospital last year, i was jumping with joy when the admissions officer told me that we were able to get a single ward! we were so lucky!

the room was newly-renovated, very very clean and the decoration was so cheerful. i lazed around the room while sen explored the new surroundings.

the MRI went ahead as planned on the next day.

sen began to fast at 12noon and at around 4pm, we were told to go down to wait for sen’s turn to undergo GA and MRI.

sen, being the sweetie pie he is, followed the anesthetist’s instructions and fell asleep within a minute without any struggle. everyone in the team was surprised because the anesthetist was just explaining to me how to handle a struggling child who might get confused just before knocking out when sen just fell asleep without any struggle.

i gave him a quick “see you later” kiss and went back to the ward, where i started to cry. it’s such a strange feeling to see your child lying unconscious on the hospital bed. i couldn’t help but cry.

an hour passed and i received a call from the MRI staff. sen had woken up and was crying for mummy.

i rushed down to see my child looking confused and scared. he was screaming “mummy 呀!mummy 呀!”

while waiting for sen to do the MRI, i had already packed our belongings and was getting ready to be discharged (because i only applied for 1-day leave). so i was a little annoyed when the staff at the MRI department refused to let us leave. they mentioned something about informing the neurosurgeons about sen’s scan and the neurosurgeons wanted to see us but they were performing an operation etc etc.. why didn’t i notice that something was wrong?

then back at the ward, a nurse came and monitored sen’s blood pressure. she said they were supposed to monitor him for 24 hours and i was like “wtf, let us go home already!

anyway, much to my annoyance, we stayed for another day.

the next morning, ward doctor came and broke the news to me. he said while the official report was not out yet, the imaging team found a large cyst in sen’s brain.

i vaguely remember asking him about the size of the cyst and he mentioned 16cm.

i got angry and told him to stop being ridiculous. how can my child have a cyst that is 16cm? it’s bigger than a (15cm) ruler, i argued.

the poor doctor apologised to me and said that he could have  remembered wrongly and gave me the wrong measurement.

well, he did not remember wrongly.

the neurosurgeon came in a while later and showed me the MRI images — the cyst in sen sen’s head was indeed more than 16cm big.. KNN..

my mind just went blank and i badly wanted to slap myself in the hopes that i would suddenly wake up and find myself having a nightmare..

i called tb and told him “there is a freaking big cyst in sen sen’s brain. come to the hospital now.

the neurosurgeon then left and said he would be back to explain things to us in greater detail..

junpig 语录

爸爸,不要摇我。我要讲话!

this was junpig’s request to his papa, who was trying to make him sleep last night. what a talkative boy sia..

Hello world!

shit happens.

actually it should be “shit happened”.

my blog was hacked and the entire wordpress database got deleted. had a real nice surprise after i got home from my two-week staycation at the hospital -__-

anyways, i requested for my whole web account to be wiped off so that i could start afresh.

so… stay tuned!