Day 16 post op

It gets tougher as days passed by. Kadang2 mama rasa takut nak bangun pagi dan drive ke hospital, takut nk mendgr update terbaru Irfan, takut nk menerima kenyataan yg agak pahit utk ditelan. Bila mama tak update blog, maknanya mama terlalu sedih utk berkata2..down.. rasa sgt lemah. Deep down inside i know the surgery has failed, they are still looking up for answers, dan mama abah hanya mampu berserah dan berdoa sayang. Jika ini yg ditakdirkan utk irfan, kami akan terima dan redha insya Allah.

Byk kali doktor2 di sini tanya mama..are u a doctor? prof lucy di icu ni siap tanye..are u a paeditrician? mungkin derng pelik bila dgr mama sebut byk medical terms yg jarang org sebut. Derang x tahu siang mlm mama google n korek segala mcm info tentang penyakit sayang ni. Byk yg mama belajar..tp tak dinafikan, semakin byk yg mama tahu, semakin takut mama nk menghadapi hari2 yg mendtg sayang..Allah je yg tahu. Ada hikmahnya mama tak amik matriks sains bio kat ukm dulu. Mama mungkin boleh lulus cemerlang, tp rasanya mama x boleh jd doktor sbb mama terlalu lemah part nk kawal emosi. Silap hb mama menangis sama2 dgn mak pak patients hehe. Lagi satu, kalo mama pegi ukm dulu, mesti mama x jumpa abah sayang yg cool dan hensem tuh hehe. Untung sgt sayang ada abah yg sentiasa nmpk tenang, positif dan support mama everytime mama berduka. Ish abah mesti perasan bila baca ni :p

Laryngomalacia is a journey that we never planned, but insya Allah we will guide n embrace it together with you. Be strong sayang, moga dgn izin Allah irfan akan sembuh suatu hari nanti..amin.

Day 13 post op

Prof did a scope again this morning. Swelling subsided alhamdulillah. Nevertheless irfan at certain times seem unable to swallow his saliva, his secretions are still a lot, and they now referred him to a GI (gastro specialist) n recommend for a barium swallow study to be done. It could be the severe silent reflux that is causing his LM to be getting worse n not improving despite the supra surgery to correct his larynx. Yesterday evening irfan looked very unsettled, unable to sleep n kept crying even after feeding. The doctor on call increased his o2 support back to level 6 to reduce the distress.

Insya Allah mlm ni surau TS akan mengadakan solat hajat buat Irfan. Jumaat lepas alhamdulillah surau di ofis mama buat solat hajat utk irfan, semua atas jasa ex-bos mama (tq bos!:). Untung irfan, ramai yg tlg mendoakan sayang..special sungguh anak mama yg sorang nih!

2 minggu mama berkampung di icu, byk perkara yg mama belajar sayang. Erti sabar, erti sebenar usaha, doa dan tawakal. Melihat bayi dan kanak2 lain yg sakit di sekeliling irfan, mmg sgt menginsafkan mama. Ada baby chinese tu katanya kes dia lg complicated dr sayang, parents dia jauh duk kat seremban, jarang mama nmpk derng. Bila terserempak dgn ayah dia, kami sama2 bertukar senyuman..senyuman yg pahit sayang...mama tahu masing2 menaruh harapan..dlm pd yg sama berduka dan sedih bila lihat anak di depan mata terlantar tidak berdaya. Kakak yg buat fisio kat sayang tadi ckp..ada ibu tu ketiga2 anak dia menghidap CP..Allahurabbi besarnya dugaan ibu tu. Mesti ibu tu sgt kuat kan...jika tidak masakan Allah berikn ujian sebegitu besar buat dia....

Mama percaya Allah Maha Adil...Mama yakin Allah takkan menguji mama dan abah jika kami x mampu mengharunginya. Mama percaya sayang akan sembuh suatu hari nnt..mama dan abah akan cuba utk terus kuat, bersabar dan sentiasa meminta dariNya. Moga Allah mendengar rintihan mama..moga Allah berikan kesembuhan buat permata hati mama yg special nih...amin.

Tidur lena2 yer sayang malam ni..jgn nangis byk sgt..nnt mama risau. Sweet dreams..i love you.

Day 12 post op

Irfan is still on cpap machine. They tried to reduce the level fr 6 to 5 and see if he can tolerates well with the reduced o2 support. Secretions are still a lot, hence the frequent suctioning. His recessions look improving n not as bad as before alhamdulillah. The doctors also decide to stick with ebm and believe it will help a lot in building his own antibodies...insya Allah (Dr Alexis ckp susu Novalac AR tu taste awful hihi)

Semlm mama dan abah hantar abg2 ke rumah nek umi kejap..so that abah pun boleh stay kat hosp tgk Irfan :) Oh ujian kafa first sem baru2 ni abg idlan dpt no 1..abg firas no 2. Mama dgn abah mmg x sangka part abg firas tu hehe. Paling best, dia mintak hadiah nk main ipad tiap2 hari haha sabor jela. Insya Allah bila sayang dah baik, kite keluar celebrate sama2 yer. Mama tahu abg2 dh boring lama x keluar jln2 hihi.

Semlm lepas blk hospital kami semua pegi bli buku latihan utk abg2. Sian abg idlan, mama langsung x sempat nk buat revision dgn dia tahun ni. Jadi skang ni kami dh antar abg idlan pegi tuisyen. Kalau tidak dulu2 mesti abah dgn mama yg ragging dia belajar setiap kali nk exam :p Tahun ni mama langsung x sempat sentuh buku abg idlan..x tahu ape yg dia blajar etc. Abg firas takpe, baru darjah 1..jadi mama abah x risau sgt. kasi chance dia enjoy lagi...

Ok sayang, mama dh abis pam. Sweet dreams. Jgn lupa mimpikan mama abah yer :)

Day 10 post op...cont'd

Later this evening mama had a talk with the dietician. Mama was given a choice whether to continue with EBM or to switch to a special formula for anti reflux (AR). LM and GERD always co-exist, known facts, undeniable and proven true based on sharing by other malacia mommies around the world. Mama tahu in US they hv been using thickeners to thicken their infants feeds, so as to prevent milk fr coming up to the larynx n further cause irritation n inflammation, which would worsen the LM. But since sayang is now on tube fed, theres no way they can use thickeners for ur ebm, as that is meant for oral/bottle feeding.

It was not an easy decision sayang. Mama nangis masa buat keputusan depan dietician tadi..to give up ebm and put u on formula. Not only that i no longer can bf u, rezeki sayang utk ebm pun terpaksa diberentikan buat masa ni. I just hope im making the right decision, moga Allah tunjukkan jln yg terbaik buat mama.

We're still looking up for all the possibilities sayang...whether it was the reflux, or the infection, or inflammation..etc that is hindering u from fast recovery. The lung specialist was also talking bout possibilities of we taking u home together with the cpap/oxygen machine...means sayang kena terus rely on machine to assist u with the breathing. Sedihnya hati mama sayang...tuhan je yg tahu.

Hari2 yg dilalui semakin mencabar rasanya. As much as i wanted n determine to stay strong, any new developmnt n news from the doctors could easily shattered my strength. Duhai hati, tolonglah tabah...

Day 10 post op

Assalamualaikum...
Pertama sekali, mama Irfan nk ucapkn ribuan terima kasih pd semua kwn2 tersayang yg slalu bertnykan kabar irfan...dan mendoakan Irfan. Hanya Allah yg boleh membalas jasa kalian semua. Setiap kali mama bc msg kengkwn, air mata ni mesti mengalir. Untung mama dpt kwn2 yg caring mcm korng. Hugss!

Mama tahu ramai yg nk dtg tgk irfan dan nk kasi moral support pd mama...tp mama belum bersedia nk jumpa korng semua. Mama akan bertambah sedih bila mulut ni mula berbicara psl irfan. Walaupun setiap hari mama berazam utk taknak menangis, tp mama masih x mampu. Prof sendiri mmg kalau boleh taknak ramai visitors tgk irfan..sbb irfan belum stabil, keadaan dlm icu yg high risk of infections, ada ketika pelbagai test dan procedures dijlnkn ke atas irfan, etc. Harap kwn2 semua faham yer.

As of today, irfan masih dlm close monitoring. Ptg semlm distress teruk, nasal stent blocked due to massive secretions, so irfan now is back on machine to assist with his breathing. Doc pun asyik trial n error sbb mama tahu they are still searching for answers. Mama cuma mampu berdoa sayang...moga semua ni akan berakhir...moga hari2 yg mendtg akan lebih baik dr hari ini. Pagi ni lena irfan tidur...ubat tidur still on every 6 hourly. Feeding dikurangkn dr 70ml ke 45ml every 2 hourly to control reflux. Reflux meds being increased. Berat sayang dh jatuh jadi 3.5kg jer..mcm newborn plak.

Be strong yer sayang. sweet dreams.

Day 8 post op

Semlm merupakan antara hari yg paling sedih buat mama. Condition sayang makin teruk, HR consistently high above 200, semua doktor2 kat icu berkerumun di tepi sayang and mama was pushed aside. Mcm dlm drama, tp berlaku dpn mata mama..ke atas org yg mama sayang.

Prof buat scope lg skali tgh hari..redness, high possibility of infections, tissue flopping again, swelling subsided partly. Dan yg paling meruntun jiwa, possibility for a 2nd surgery for the 1st one may not be done enough. Cpap taken off, a stent was put thru ur nose to keep the airway open. Sedated every 6 hourly to reduce distess. Frequent suctioning still.

Sedihnya mama Allah je yg tahu. Mama nangis sepuasnya dekat surau..walaupun depan Prof mama dgr explanation dia dgn agak tenang.

Mama x pasti apa yg berlaku dan menanti pd hari2 yg mendtg. Mama cuma mampu berdoa dan merayu pd Allah moga sayang akan sembuh suatu hari nnt..we will keep praying for u sayang. pls stay strong yer.

Day 7 post op

Irfan's recovery progress has been stagnant, not getting worse n not getting better either. We just need to be patient n give him time. Today the ENT n ped tried to take off the cpap machine for a while but Irfan couldnt breath properly room air, hence back to cpap again but at a lower dose. No fever or any sign of infection alhamdulillah. At certain point of times he looked very calm n composed, but most of the times the RR and recessions are quite significant. Today Irfan tidur lena, being sedated 6 hourly to reduce the distress.

Ustazah Sue (ustazah abg idlan di Kafa) ada call mama tadi tanya pasal Irfan bila ternampak posting abah di fb. Biasalah mama bila buka suara bercerita psl Irfan mesti akan menangis. Irfan dan baby ustazah Sue sebaya tau..beza sehari jer. Ustazah akan minta anak2 kafa utk baca yasin dan doa selamat buat sayang. Abg idlan, firas dan ammar pun setiap mlm mesti solat hajat buat Irfan. Abg2 semua tak sabar nk Irfan blk rumah tau :) Mama pun rindu sgt nk peluk Irfan, breastfeed, dodoi irfan bila irfan nangis...aduhai lama dah mama tak dengar suara irfan menangis.

Dah seminggu mama jadi exclusively pumping mother. Setiap 3 jam mama akan pam susu irfan...tapi tgh mlm kdg2 mama terlajak gap sampai 4-5 jam iskk tido mati mama nih! huhu
Setiap pagi sebelum 830am mama akan sampai kat hospital. Keluar awal mcm nak pegi ofis, route pun sama cuma terlajak ke depan sket jer utk jumpa Irfan hehe.

Hari ni mama pecah rekod langsung x nangis kt hospital tau..god job mama! Bila tgk irfan tidur lena dan tenang je, hati mama pun rasa tenang :) Tapi time update blog ni..time drive blk tadi..mama tetap sob sob huhu..hati mama rasa luluh sgt bila terbyg wajah irfan.

Cepat baik yer sayang. Moga Allah sembuhkan sayang mama sepenuhnya amin ya rabb.

Day 6 post-op

Irfan is still not progressing well. despite frequent suctioning his secretions are still thick n in large amount. breathing assisted with bipap (high pressure o2). They will repeat culture test to check for infections. Deep recessions probably due to edema/swelling. Prof Anura asked me to be patient as recovery period for patients varies..maybe 1 wk..2 wks..or even more..which broke me into tears.

Be strong yer sayang. Mama harap mama cukup kuat nk menghadapi hari2 yg mendtg.  
Setiap kali mama teringat muka Irfan, air mata ni mesti mengalir..time mkn..time drive..time solat..time nk tido...time mandi...time pam susu...time update blog ni..time wassap dgn kwn dan family. Besarnya dugaan yg Allah beri kali nih.

Sembuhkanlah Irfan Faris kami Ya Allah...

Day 4 post-op

Still on cpap. thick secretions. 3hrly suctioning. heart rate very high above normal lvl,which is not a good indication. sedated to keep him calm while at the same time to relax his airway. tube fed. 2oz 3hourly.

Honestly i felt lil bit relieved seeing him sleeping peacefully...rather than to see him awake, struggling to breath for room air...crying in pain. It must be hard for you to tolerate with all those swelling huhu. Though sleeping, recessions at his neck is still significant (when HR is high), kesian anak mama. It must be very painful for u sayang. Sabar banyak2 yer. keep fighting n be strong sayang. kami semua sentiasa doakan irfan cpt sembuh. Irfan sentiasa ada dlm doa dan ingatan mama dan abah.

Tidur lena2 yer sayang...jgn nangis byk sgt. esok pagi mama dan abah datang ok. sweet dream. we luv u loads.

3 april

Irfan had a scope this morning. epiglottis still swelling. will be on cpap till weekend. too mny secretions more than normal..hence continuous suction. phlegmy as well, on neb. suspect infection, but will monitor first b4 antibiotic kicks in. tube fed. susu only 1oz 3hourly.

today was way harder for both of us. even hubby tak boleh tahan sebak bila tgk muka irfan nangis meronta2 suara tak kuar. pasrah bila asyik kena suction. air mata mengalir kt tepi...dan setiap kali tgk muka dia air mata mama pon mengalir jugak. zikir bersulam air mata bila sentuh dia. tp cover2 jugak malu kt nurse hihi

kuatkanlah hati kami Ya Allah. sembuhkanlah irfan faris Ya Allah.

post-airway surgery

31 march- Irfan had underwent an airway surgery @ 11.25am. Procedure took approx 1hr. Intubated for 48hrs, under morphins, tube feeding, in PICU.

2 apr- extubated this morning, morphins taken off, but still breathing with o2 assisted. fasting since 6am to assess his breathing capability. it was so heart-breaking watching him crying yet i am unable to do anything to comfort him.

1pm- irfan was put on cpap machine as his o2 sats level wasnt going very well.

3pm - blood test result shows improved sats level. but still need to continue with cpap probably for a day or two, which means further stay in picu.

Ya Allah sembuhkanlah anakku sepenuhnya dan hilangkanlah kesakitannya. Berikanlah kekuatan kpdnya utk melawan sakitnya ini Ya Allah.

On another note, Ammar was unwell yesterday n had to take a neb. His fever subsided today but still has coughing n wheezing. Moga Allah sembuhkan semua anak2 mama dari sakit mereka.