AISY’S DRAMATIC MRI SESSION 2015

Hello dear readers, firstly I would like to apologise for being silent for almost 3 months.. it has been quite hectic for me at work and at home.

So here’s an update of what has been going on with Aisy... on 26thJanuary 2015 we got him admitted to HKL at the Neurosurgery Ward for his MRI.. if it were conducted under institute pediatrik tak payah overnight pun. Just come for the day jer but neurosurgery punya procedure lain, kena admitted and stay over a night for the following day punya MRI.. Aisy is now 2 years 3 months.. and u know la what they say about toddlers being two years of age right? So yeah Aisy doesn’t know how to sit still, not even for 5 minutes.. hubby and i are glad for he is active but worn out bila asyik nak kena kejar jer huhuhu...

So anyway... we didn’t have the admission form, we only had the letter they sent us few months back informing us of the MRI date. So kena lah pegi ward, amik admission form, then drive back to the emergency area to register... after almost one hour of waiting to register, and hubby kena pusing hkl tak tau brape round hehehe sian dia.. kitaorg decided to go for breakfast first because bukan nak rushing pun masuk ward since the MRI is the next day kan... so masa nak pergi breakfast, ade lah drama suami isteri... nangis2.. bla bla bla hahahhaa anyway... lepastuh we went to the ward..

So they put us in this one room with empty beds and kitaorg jer dalam tuh, so lega la sikit sebab takde org kan... well at first i thought la... N this is aisy mengenang nasib hehehe

then suddenly they moved us to the next room yg dah penuh coz there was one empty bed.. then tak sampai 5minutes. Moved us to another room... the old room where we used to stay the last time.. uuurrrghhhh... angkut lah brg2 lagi... i was quite pissed la tapi sabor jelah...

So we waited...... n waited.... n waited.... then i asked the nurse.. is there anything that we r supposed to do here? She said oh wait, let me check kul brape MRI dia esok... then she said oh ok, hari ni tak buat ape2 bcoz his MRI is at 1.00pm tomorrow. So nak check darah and masuk line semua buat esok pagi.... and i’m like ???!!!!!... so uall suruh kitaorg masuk pagi2 untuk TAK buat ape2 lah ek? When i told hubby, dia lagi bengang... so we asked when is the doctor coming coz kitaorg nak balik... like seriously, duduk tak buat ape dgn aisy duk ngamuk2 nak ke sana sini.. lari2 dlm ward..jerit2... while the other neuro ward patients terlantar atas katil with tubes coming out of the heads... kesian diaorg... 

So we waited n waited again... for the doctor... he’s in surgery, so kena lah tunggu... aisy and ayahnyer dah pegi tido kat kereta sebab aisy dah takleh nak duduk dlm ward dah...then i think around 5pm.. the doctor came... so i call hubby suh masuk balik ward... then after doctor asked me few questions.. i said to him, “i have a request.. can we go home..since theres nothing to do here today and we’ll come back first thing in the morning tomorrow around 7am..?” he called his boss and he said okay, we can go...dia ckp kalau awal2 dia tau kitaorg nak balik, he would have let us go earlier... hmmmmm anywayyyy a whole day is wasted doing nothing ... great...

Morning of 27 January 2015.... kul 7pagi dah terpacak kat ward... around 9am... nurse suruh bawak aisy to the bilik rawatan nak cucuk tangan... of course ayah dial ah bawak, anak ayah kan... menjerit2..teriak abisss... ingatkan skejap jer macam kat institute pediatrik... but it took them like 20minutes!! Gila lama nak pasang line... he was crying for full 20minutes! Mula la hati ni geram.. then finally after dah siap... tgk aisy dah mula la nangis tarik2... tengok tangan dia dah bengkak2.. belah kiri belah kanan... banyak bekas needle poke yerrr... eeeee marahnyerrr ...kalau diaorg apologise and ckp elok2 takpe.. ni kerek2 plak... hubby ckp, dah lah, lepas ni xnak masuk ward ni lagi...

Then the time came for us to go to the MRI place.. i think it was around 11am kot.. aisy kena duduk atas stretcher to transfer him there.. mmg x larat la if ibu or ayah nak angkat dia and Jalan sejauh2 alam tuh... letak dia atas stretcher dia dah meraung2... sedih..trauma semua cukup... alahai anak ibu...

After a long fast walk to the MRI centre, aisy pun tertido lepas dah nangis2.. nasib baik dia tido sampai lah turn dia untuk masuk scanning... 

they gave him sedation... sekali x cukup... dua kali pun x cukup... kena tukar sedation kuat skit.. i don’t remember the name of the drug, all i remember is it was white in colour... terus konk out....

After about 40minutes, Alhamdulillah selesai semuanya... then we went back to the ward.. tapi aisy tak naik stretcher coz they had to use it for someone else.. aisy kena duduk atas ibu dia and ibu dia duduk atas wheelchair hahahah...first time i naik wheelchair... mmg segan dengan attendant yang tolak wheelchair tuh sebab dia sgt kurus dan saya sgt bam bam hahahahah...kesian kat dia... but no choice... coz aisy tengah lalok, xleh nak jalan or carry... and so... aisy pun recovered from the drugs...minum, makan macam2..lapar kesian.. puasa since pagi lah katakan... 

then later that evening we got discharged.... tunggulah 12 February 2015 for the MRI results... urat2 leher mula lah tegang..

.....................................

12 February 2015... 10a.m.... We went in to see the doctor... first he displayed the new films, then the old films to see the difference... 

“hmm.. it looks like there’s a change... it looks a bit bigger than the last one..” “duppp..!!” jantung sudah jatuh... then he took out a piece of paper that shows the lab results of the MRI.. the ACTUAL RESULTS!... dan dgn senang lenang doctor ckp, “oh but it says here, the tumour remains UNCHANGED...I’m sure they are right since they have the tools to measure it..” .....................like seriously??? Bagi jantung i jatuh tak pasal2, then say it’s unchanged? Haihhhh...xpe  xpe..syukur2...sabar2... then as usual la the doctors asked us about doing surgery on it n all that... then i told them our decision about not going into surgery remains UNCHANGED.

But of course.. the surgeon had to have his last words and said.. “Well alright then, but if the cancer spreads..it’s gonna spread fast”.............Well, thats only for God to know isn’t it?

Anyway.. despite the lil drama... hubby and i are truly thankful to God and to those who have prayed for Aisy’s well-being... We can never repay your kindness... THANK YOU!

Decision Decision..

The day has come where we have to give our decision to the neurosurgeon. Unfortunately, I tak dapat pergi because of my sudden back pain yg membuatkan i takleh jalan, duduk sakit, berdiri pun sakit.. Haihh.. So hubby had to go by himself to see the neurosurgeon...

So the whole day, i waited for him to come home and tell me what the doctor said regarding our decision.. biaselah lelaki, they never tell a story in detail kan.. unlike most women where kita akan cite kat dia dari time kita sampai hospital, sampailah balik hehehehe.. betul tak? so this is how hubby sums it up lah..

Reach the hospital and got to see the doctor around 1.30pm..

Hubby: So doctor, after much deliberation and sembahyang istiqarah.. our decision is not to proceed with the surgery..

Surgeon: Oh i see.. but u are aware of the risks right?

Hubby: Yes, i’m aware..

Surgeon: Alright then, I respect your decision.. but Aisy has got to come here for regular check ups yeah.. perhaps every six weeks..just to see his progress..

Hubby: Sure, no problem. Thank you Doc.

Left the room at 1.45pm...

Logic tak conversation ni takes 15 minutes? hehehehe tak logic kan? im sure theres more to this.. tuh la tak suka bila miss important appointments mcm ni.. hahahaha

Anyway, on a serious note.. our decision is not to proceed with the surgery.. we are seeking and trying alternative treatment (no, not bomoh).. after praying and doa for guidance from God.. He has led us to this decision.. and Insyaallah we stand firm by it whatever the outcome is.. good or bad.. it is all His plans for us.. the only thing is.. whether we are ready to accept it or not..? I sure hope we are..

Well readers, please pray for my son’s well-being.. so that he can have a healthy and normal childhood..

Thank you..

 

MRI results :(

4th Feb 2014, hari penentuan huhu.. Dup dab dup dab jantung ni nak gi tengok MRI results Aisy.. We reached the hospital about 9am. Appointment is at 10.30am... Hubby bengang sebab kuar awal sangat hehehe yelaaa.. Susah kan nak dpt parking kat HKL tuh. So takpelah kalau sampai awal.. Takdelag tergesa2.. Xpelah men n women dont think alike hehehe .. Anyway, so bila dah sampai, dah dpt parking, we sat and played with Aisy in the car sampai kul 9.30am camtuh. Then kitaorg gerak to the Neurosurgery Clinic.. 

As usual..sampai kul 9.30am, appointment kul 10.30am, dapat jumpa doctor at 1.00pm.. Huhu Aisy pun dah puas main at the whole 5th floor sampai letih n ngantuk dah hehehe

Okay.. The neurosurgeon called us in.. Hati ni sangat mengharap positive results bcoz lepas dah buat rawatan Islam tuh, keyakinan utk Aisy sembuh bertambah.. 

However, Allah lebih mengetahui.. Lepas doctor dah check physical progress Aisy yang sihat tuh, he showed us the films pf the results.. Hmmm... 

"So okay.. U can see the tumour is from L2 to L5.. It has penetrated the spine an is pushing the saraf tunjang".. "Kita tak tau bila dia boleh paralyse or anything like that, so my suggestion is to do operation lah to take out the one yang compressing the saraf tunjang".. 

........ I asked, "what about the tumour thats surrounding the spine?"

"Oh itu i tak boleh pegang sebab byk saraf motor.. And plus utk yg lain tuh he needs multiple surgeries lah"... 

Hati ni rasa macam mane ek? Taktau nak describe how i felt when the doctor told all that dengan nada yang sgt tak prihatin.. Ok, feelings aside, "so what are his chances? And what are the chances that the tumour will masuk balik dlm apine canal?"..

"Well, i tak boleh bagi percentage tapi semua tak certain lah.. I cannot jamin if the surgery can be successful or not, i cant say if he will survive after the surgery, i cant say if he wont have a brain infection or infection to d spine.. Tumour tu pun i kena bukak and tengok dulu, baru tau boleh buang fully, we will try to scrape, sedut, bakar, semua lah yang boleh dibuat.." 

Doctor showed a video and images of how its gonna be done but all of those cases as he call it, are simple cases. Aisy punya is complicated. 

Hmm.. Mata dah berair dah.. Dada dah mula sakit.. 

 "We cant decide now", hubby said.

I added, "u know as parents, seeing him reach his milestones without any problems and hes running and active like a normal kid, then suddenly nak bagi dia lie on the bed dunno whether he'll recover or not"..

"Well, he is okay for now lah.. later u taktau.. Okay, i give u two weeks to decide, coz i need to know asap whether u want to proceed or not, tapi ingat, if u tak nak, then anything happens to ur son, paralyse ke ape, then baru u all nak datang suruh buat surgery, i cannot do it immediately lah hah? U all wait in line lah. Tunggu lama lah yer. Coz 15 million people come here to get treated eventho banyak lagi hospital cantik2 kat luar sana.. Why? Coz we have the expertise here..so u all decide lah.. Come back to me on the 18th feb..

Sakit hati pun ade bila dengar dia seolah2 mcm threaten us like that.. Haihhh.. Sabar lah yer doctor.. Kami kena mintak petunjuk dari Allah dulu.. Let Him guide our decision.. Bukan boleh senang2 nak decide.. If its us, out body, boleh la.. Ini nyawa anak kami.. His well-being.. Its not easy.. 

And so.. We went home with our hearts full of pain.. Minds full of worry.. Thoughts only for Allah.. Seeking His guidance.. And His mercy.. 

After going home and discussing with our parents and families.. We have decided to give him alternative supplements.. Herbal based supplements, with hopes it will help reduce, maintain or even cure his cancer.. Despite how skeptical people are about these kind of treatment, and how doctors are against it.. Korang takkan tau sampai benda ni jadi kat anak korang sendiri.. U will do anything and try everything to avoid him from going thru any pain and misery.. Eventho its more expensive than our treatment in HKL. Its worth trying.. 

For now, we still havent decide on whether or not to proceed with the surgery.. Tunggu jelah 18 february 2014.. Tengoklah Allah gerakkan hati ni nak kata ape.. 

Skang tengah nak buat merchandise untuk raise cancer awareness and also nak raise funds utk Aisy punya medical supplements since its quite xpensive.. Cuba lah cari cara ape2 pun nak collect funds huhu.. For now, tgh nak buat car sticker.. Huhuhu 

Doakan lah supaya kitaorg diberi petunjuk dan jalan yg benar dalam setiap urusan dan decision yg kitaorg buat.. 

Hati sayu jer.. Haihhh.. 

Second MRI

Haluu.. Well apparently aisy punya MRI came sooner than we thought.. I tot it was going to be done in january 2014, but suddenly the hospital called me last friday.. And asked us to admit Aisy on the next Monday which was two days ago.. Coz they wanna do an MRI on 24th December 2013. Hmm ok lahh fine.. Tp yg lecehh nyer is kena admitted one day before.. Sebelum ni masuk unit rawatan harian jerr. But now new procedure, hv to stay there d day before... Oklah i tot to myself, maye its not so bad lah.. Coz they asked us to admit an the neuro building instead of tempat biase which is institut pediatrik.. Hmm ok.. So since hubby keje, i asked a favour from my mom to drop me n aisy off at HKL.. Nasib baik dia ade..

So came Monday, kitaorg pun gerak to HKL about 12.30pm.. Smp around 1.30pm, mama dropped me at the emergency untuk i buat pendaftaran.. Pastuh dah siap, i tunggu mama pusing one more round n pick me up.. So cari2 la neuro building.. Tanya sana sini.. 

Finally we found it.. Ok, so i amik brg2 n check in to the ward.. Since takleh tunggu, mama had to do another round sbb kena tunggu i amik aisy pulak from the car.. Sian tok mama, pusing2.. Huhu 

So bila dah masuk.. Hmm.. Xde aircon.. kipas jauh... Errrmmm.. I plak jenis berpeluh sakan punyerr.. Adelah bawak fan kecik letak atas table.. Tp still doesnt help.. Takpelah, Sabar jer since its only one nite.. 

This is how the ward looks like. Agak small la compared to IP.. Masa admitted, Aisy demam.. Actually dia dah demam dua hari before but temperature up n down, up n down, so i gave him paracetamol (PCM), dia kejap ok kejap panas.. I told d nurse pasal fever dia, she said she wud consult d doctor.. 

So then anaes pun dtg, this is bcoz aisy kena sedation utk buat MRI..so kalau sedation biase takleh tidokan dia.. They will give GA which i mmg nak avoid lah kan.. Too much GA for him pun no good.. Baru x sampai dua bulan lepas kena GA dua hari brturut2 kan..  So anaes tanya n explain mcm2 but of course after so many experience of aisy masuk operation theatre, loghat nyer pun dah mcm expert la kan.. Siap doctor tuh tanya i, "r u in the medical line?" Hahahahah gelak besar i.. "Having a son in this condition would somehow make u an expert" i said.. She understood lah.. So i signed the papers and she went off.. Quite a sweet lady..

Then bila dah almost mlm, fever dia getting higher n higher.. No thanks to the warm environment..nurse kata "ohh,doctor suruh tuam je dulu".. Wth?? Hes been having temperature the whole day pun xnak bagi pcm jugak? Haihhh ok fine..Dah malam, aisy pun tido, with cool fever tepek sana sini.. And i keep on tuam kepala n badan dia.. Dia tido tp skit2 merengek..tau la kan budak kalau demam camne..sian dia x cukup rest..

Ketiak kena tepek dgn cool fever.. Huhu

Kat sini they dont provide katil untuk us mommies.. Kitaorg disuruh utk tido sekatil dgn anak.. Sbb space nyer x cukup katanyer.. Tp ade gak parents yg nak bagi space kat anak dia, x selesa tido berhimpit..kesian i tgk.. Dah la letih pale otak.. Letih badan plak..

Mlm tuh mmg sgt x selesa, biaselah bila tido sekatil, kita try not to move sbb takut ganggu dia tido.. Lagi2 bila dia tgh demam.. So dapatlah tdo dalam dua jam.. In my own sweat.. Rambut dah lencun.. Haihh.. Sabar2.. Xpe2.. 

And the morning comes.. They said aisy first case.. So aisy bangun nangis2 coz lapar.. Dia kena puasa from 2am.. They took him into bilik rawatan utk masukkan line kat tangan.. Mmg i dgr jeritan batinku dia lah the whole time..

After that diaorg pass kat i chloral hydrate utk bagi kat aisy orally.. So that he sleeps by the time smp sana.. So i ingat kita tunggu ambulance to bring to the MRI centre.. Rupa2nya kena jalan sampai sana ikut lorong2 staff.. Gituuu kauuu.. Jauhhh kott..i pun trkejar2 la staff nurse yang tolak aisy.. Laju gila diaorg jalan.. Huff huff huff... Nasib baik x sompuit.. Heehe akhirnya sampai.. So bla bla bla.. Semuanya selesai..

Alhamdulillah.. Tapi diaorg kena add onn mida punya sedation.. Sbb dia dah trbgn masa baru nak start MRI.. And so everything went well.. Hubby dtg aroud noon.. So tunggu aisy bangun from sedation and menyusu tanpa muntah..

And about 3pm, we were released from the hospital..yeayy finally!! Balik rumah.. I yg lagi relief sebenarnya huahuahua.. Ok, see u in next post people!