Sunday, 27 October 2013
Emergency
Tuesday, 1 October 2013
Continuation of Treatment & New Allergies
Sorry dah lama dah tak hapdate.. busy with aisy of course.. so anyway, after the MIBG scan that we had to repeat for three days.. few days later.. hospital call and asked for aisy untuk sambung chemo..the third cycle.. so maksudnya masih ade lagi lah cancer cell dlm badan dia.. hmm takpelah.. nak buat camne..
So on 5 Sept 2013, we got aisy admitted to the oncology ward.. as usual.. 5 jam chemo sehari untuk tiga hari berturut2.. Doctor said he needs to do two cycles, then kena buat ct scan for evaluation of progress later on.. hmm ok..
Alhamdulillah aisy was doing great masa ni.. tapiiiii... since he is so active.. masa second day, line yg pasang kat chemo port dia tercabut keluar.. luka kulit dia kat area tuh.. haiyoo.. menangis lah dia... nasib baik tercabut masa masuk air jer utk hydration.. kalau masa chemo... i yg pengsan sbb mesti terbakar kulit aisy kena ubat chemo tuh.. eish naudzubillah... haiiihh anak..anak...
So doctor pun cucuk lah line baru.. so after four days in the hospital.. treatment okay..aisy pun okay.. so its time to go home.. masuklah bilik rawatan untuk cabut line dari chemo port dia.. bila cabut.. alamak.. dada dia besar sebelah.. doctor pun cuak.. haiyookk camne boleh jadi mcm ni? Doctor perasan jarum yg cucuk kat port tuh dah terkeluar sikit.. so apparently air drip tuh dah masuk ke tissue badan aisy instead of masuk ke line port tuh.. haihhh ni mesti sebab dia banyak move nie..
So the doctor kata tunggu sejam tengok whether surut ke tidak.. Alhamdulillah after an hour, mmg surut sikit lah.. then specialist pun dtg.. specialist ni plak risau lebih.. dia takut chemo port kat dlm badan dia disconnected yang membuatkan bocor and air masuk ke tissue.. ayyyookkk.. ade kemungkinan jugak tapi rasanya macam tak kot sebab dah nampak jarum line tuh terkeluar skit dah kan.. hmm but still specialist tuh insist aisy buat xray utk check the chemo port..still intact ke tidak.. baiklahhh doctorrr.. nampaknya minggu depan kena la dtg balik utk Xray pulak.. so for the mean time doctor bagi balik rumah.. tapi dia pesan kalau tetiba tempat port dia tuh merah ke.. or dia demam ke.. kena terus bawak balik ke ward ni.. “baik Doc!!”
So we went home on sunday, 8th sept 2013.. Xray appointment was given for 12th sept 2013.. pendek kata, we went for the Xray and Alhamdulillah all is well.. benda tuh still in good condition.. so betulah it is because jarum tuh dah nak terkeluar.. thats why bengkak sekejap..tissue masuk air..
Oh before that, a day lepas aisy discharge, naik rashes satu badan.. This is something new because usually bila lepas chemo sebelum ni, dia cuma naik bintik2 skit2 jer kat tangan camtuh.. Tapi ni rashes satu badan.. Menggaru jelah dia.. Besar kemungkinan this is bcoz of the blood transfusion yg dia buat masa operation hari tuh.. 3/4 darah dia diganti dgn darah org lain.. So his allergy jadi lagi teruk.. Means darah dia dulu lagi better dari darah org ni.. Hmm well what to do.. Consequences yg unavoidable.. But a day after that, rashes dia pun subside..it didnt last long la alhamdulillah.. I didnt put anything on the rashes, biar benda tuh baik sendiri.. N it did.. Kena la notify doctor during next chemo session..
Next chemo.. is scheduled three weeks after.. which is 26th Sept 2013.. see u in that entry!
Tuesday, 10 September 2013
The Putrajaya Hospital Experience
4th of June 2013, we reached Pjaya Hosp in the morning, sangat serabut, sampai2 je, tetiba rasa satu macam.. hmmm.. uh oh.. mcm lampu merah jer.. larilah pergi beli “roti” dekat hospimart, then lari ke toilet kasi pasang huhuh.. mmg betul la lampu merah.. ok fine.. dah berpeluh2 dah nih..
TIBA-TIBA...Aisy buat business besar la pulakkk.. cari baby room, takde??!! Seriously?? And i saw a sign saying this hosp is baby friendly hosp.. i was like.. (giving a sarcastic face).. okay fine, masuk toilet.. takde tempat pun untuk i baringkan anak i.. hmm camne nak tukar lampin ni.. orang dah makin ramai ni.. nak register lagi..nak dapatkan nombor yg terawal nih.. stress stress...pusing2 nampak opposite clinic paed tuh ade bilik menyusu.. hmm.. walaupun ade notice kata takleh cuci berry anak kat situ..lantak lah..abih tuh, takkan nak tukar kat counter nurse kan? Hangin kejap.. ok, masuk nursing room tuh, nasib baik ade sink.. okay tempat nak letak aisy limit skit tapi boleh la make do.. okay letak aisy atas table tepi sink tuh.. dia plak meronta2.. bukak lampin, basuh berry dia kat sink, jerit2 dia sebab air sejuk.. nak buat macam mane kan.. terpaksa la.. then dah cuci, nak lap, pakai lampin semua, aisy tak mau duk diam, last2 terhantuk kat dispenser tissue kat dinding tepi tuh, lagi la melalak dia.. hadoii.. peluh menitik2 nih.. tetiba tgk baju pun sudah kena berry la pulak.. amik plak baju, kasi tukar, mmg wrestling habis dgn aisy yg tgh mengamok.. dah siap semua.. terus angkat aisy, bukak pintu, pass dia kat ayah dia.. huh!!!!! Letihhhh... ok the hard part is done.. now nak gi counter amik number.. tetiba hubby kata.. takpe yang.. i dah amik number and register, u cuma bagi info kat counter register tuh jer.. wahhhh.. sangat lega rasanya.. rasa cam nak cium cium hubby kat situ.. sebab sgt meringankan beban dan menghapuskan serabutness yg ada..
Ok so dah settle kat counter, tunggu la kat waiting area paed clinic tuh.. i think 1 hour plus kot? I don’t really remember, but its around that la.. Aisy memang pengsan dah sbb tunggu lama..pastu diaorg panggil amik darah sume, timbang.. then jumpa doc.. doc pun check2, and she asked a lot of questions of course.. and so did we.. hehehe
After checking and all that, doc said memang ade something kat situ, so she called the specialist asking whether or not we should be admitted. After describing her findings to the specialist, he asked us to be admitted on that day itself for further investigation. Oklah. So we went ahead n registered for ward admission.
So dekat ward yang first class tuh, it was quite comfortable cuma i don’t understand why diaorg tak provide bed for parent yang overnight. Instead they gave a reclining chair.. memang patah pinggang lerr.. we stayed till friday kot... me and hubby took turns.. the first night.. i cried.. just looking at my son, kena cucuk peripheral line kat tangan and whatnot.. talking about cucuk line.. hangin balik rasanya bila teringat this one doctor kat situ.. HMO je kot.. Ya ampun.. boleh tak dia datang ke katil we all, pukul 1am, saying nak pasang peripheral line kat aisy, i cakap.. “alaa..dia baru jer tido, boleh tak buat kejap lagi sebab nak masukkan drip pun kul 4am..”.. dia kata, “takleh, kul 4am jap gi banyak lagi patient nak admitted..”.. boleh?????????? Dia ingat aku nih bangang ke hape?? Mane ade orang admitted kul 4am unless emergency cases kottt.. pastuh yg lagi siut (im being nice) nye lagi.. i tak sempat nak bangun and kejutkan anak i elok2.. tetiba dia angkat anak i macam tuh jer!! So my son woke up terkejut and looking at his masked face.. then bwk masuk bilik rawatan and restrained him and nak cucuk line.. of course la anak i terkejut, tetiba bangun kena cucuk bagai kan.. eeeee geramnyerr bila teringat.. tambah2 lagi, i taktau brape kali dia cucuk.. tak jumpa vein!! Anak i dah melalak tahap gaban dah.. sampai tarik tau tak.. i went in the room and told him to stop and continue later on, i need to calm my son down.. nurse plak halau i kuar, boleh??? Then i went to the counter, nampak doctor yg betul2 doctor and told her of the situation. So she went in then skejap jer dah settle semuanya.. i carried my son and dia dah stop nangis..but still tarik.. hancur hati tgk dia mcm tuh.. then i tried calming him down at the tv room.. but dia still on off nangis and still tarik.. after that, i went to the nurse yg halau i tadi coz i couldn’t find the inconsiderate b******.. i asked her his name..and told her to tell him “Don’t ever come near my son again!”.. that was the last time he handled my son’s case.. My son tarik smp kul 4am tau.. eventho he has fallen asleep.. so parents out there, it’s okay to say no or to question their treatment towards our son.. doctors are not always right.. we can always refuse.. but be smart and choose ur battle wisely.. btw, my son until now, is still traumatised when it comes to setting up the line, he just needs to enter the bilik rawatan, dia dah melalak dah.. thanks Dr HMO!! Thanks a lot!!! fuhh lega rasanya dapat luahkan perasaan..
Ok anyway, kat sana, they did few scans.. ultrasound, xray and ct scan.. baru i tau yg anak i memang tak affected dengan ubat..hahahaha coz they had to give him morphine to knock him down masa nak buat ct scan.. wahaha.. hebat sgt.. anyway, i think it was wednesday night kot.. the doctor came and told us about their findings.. masa tuh.. dunia ni rasa gelap jer.. it felt like everything has come to an end..
Doctor said, “We found a tumour near his kidney... it is about 9cmx6cm in size.. we’re not sure what it is specifically.. it could be Nephroblastoma a.k.a Wilm’s tumour or Neuroblastoma..”
........................................................ Silence.... both my hubby and I were silent for a moment.. then we asked him a few questions then the doctor left.. both our heads couldn’t register what the doctor just said.. so i just kissed my son, hugged my hubby and left..coz it was hubby’s turn to stay the night.. yes i know some of u might judge me and say, “how could I leave my son and go home?? Ape punya ibu la macam ni and whatnot..” lantak la korang nak kata ape.. for me, its all about practicality.. if my hubby and i take turns staying overnight, then at least both of us have enough rest in order to take good care of our son.. ada paham tak?? In the day, both of us will take care of him, then bila malam, kitaorg tukar2 la tido kat sana.. sebab nak jaga orang sakit, minda kena cergas, hati kena tenang, tidur mesti kena cukup.. so if we have the chance to do so, why not? Kalau mmg dah takde pilihan macam single mothers or fathers tuh, memang takleh buat ape2 la kan.. so i think u guys get the picture.. nak terima ke tak.. tak kisah la..
Anyway... when i left the hospital.. while walking to the car.. air mata menitik bagai nak rak tanpa sedar.. tetiba jer nangis teresak-esak..masuk kete.. tenangkan hati.. sebab takut nak drive dlm keadaan macam tuh kan.. kang teraccident satu hal la plak kan... so dengan hati yg serba relax serba tidak tuh, i pun drive home.. masa nak sampai rumah.. tetiba kawan office call.. tanya i.. macam mane? Ade ape2 results tak? ....................... terus berderai ayaq mata cheq.. nak cakap tapi tak keluar ape..kawan i mesti terkejut kot time tuh.. tetiba dengar i meraung kat telephone.. meraung sampai la depan umah.. park kete.. pastu try control nangis.. kawan i sabar n tunggu jer on the line.. then bila dah boleh ckp.. i told her what the doctor said.. rasa macam nak terjun bangunan dah masa tuh.. (pls excuse my expression yea.. im not suicidal, just expressing the details of my heart).. then she asked me to calm down and update the office of any news..
Masuk umah, cite kat Mama.. oh by the way, we stay at my mom’s place since my mom is a single mother.. kesian nak tinggal dia sesorang.. so bila dah cite kat Mama, meleleh lagi la air mata.. pastuh naik atas.. nangis sampai tertido sambil peluk baju anak..
Then when Friday arrived.. doctors still nak hold kitaorg sebab nak buat investigation lagi tapi hubby dah fed up dah sebab hosp buat anak dia macam experiment exhibit kann.. doctor nak observe air kencing lah ape lah.. but i refused sebab i tak nak diaorg buat macam2 but diaorg sebenarnya taktau sangat pun.. plus bila pakai catheter kat saluran kencing tuh, possibility of bacterial infection is quite high and im not willing to risk it la kan.. sebab one thing i memang very particular when it comes to my son’s exposure to the dirty world nowadays.. bukan dirty ape, maksudnya mcm2 penyakit, udara tak bersih.. n all that la.. so i don’t bring my son to places mcm pasar malam.. supermarket.. or tempat2 yg ramai orang, tempat ramai orang akan batuk and bersin kat muka kita la senang kata.. biarlah orang nak kata ape kan.. lain org, lain la cara jaga anak.. oops dah terdivert pulak.. ok sambung.. so last2 the head of paed datang jumpa kitaorg uallsss.. dia kata dia follow case aisy this past few days.. tapi dia kata.. dia kena refer kitaorg kat HKL sebab nak buat MRI semua.. and Pjaya don’t have those kind of facilities.. so kami direfer untuk pergi hari pada hari isnin pagi.. and so, our chapter at Pjaya Hosp ends..









