Update for Kimi & Afiq

Assalamualaikum,

Memang niat nak update every week, tapi tak sempat. Jadual 2,3 minggu ni memang sangat hectic.

Update Afiq

Sekarang ini keadaan Afiq tak berapa baik. Berat badan tidak naik seperti yang diharapkan. Afiq still jeluok lagi. Graf BMI pun menurun drastic. Berat masih tak sampai 5kg walaupun dah umur 6.5 bulan.

Baru-baru ni, gastrostomy button Afiq ada masalah. Susu keluar daripada button apabila Afiq meniarap. Nak consult dengan sister-in-charge, tak berjaya. Telefon, tak jawab. Message, tak balas. Tinggal voice mail, tak return call. Tak tahu nk mengadu kepada siapa.

 

Update Kimi

25 Jan baru ni, bawa kimi pergi jumpa pakar di HKB. Initial diagnosis - hyperactive and symptons of autism. Doktor pakar tekankan bahawa hanya symptom autism, bukan full autism.

 

13 Feb baru ni, bawa Kimi gi occupational therapy. Objective - behaviour modification. 1st visit, nampak OK; next visit is on 29th Feb. Daripada visit ni, pakar ada sebut 2 benda yang aku tak nampak sebelum ini -

1) Kimi dalam keadaan tenang bila naik swing (buaian) pada kelajuan yang perlahan. So, pakar tu suggest tu buat behaviour modification ketika Kimi dalam keadaan tenang. OK, will try that. Mungkin kena beli swing letak dalam rumah.

2) Kimi suka repeat benda yang kita sebut. Ini adalah cara dia belajar

 

I wont be surprised Kimi will excell academically in his studies. His memory is excellent. His observation is sharp. Sekarang ni dia dok sebut nama surah dalam Al Quran. His ability to learn by himself is

 

Feb & March are busy months, in terms of hospital appointments. Average appointments per week is 2, ada yang sampai 4 appointments. Disebabkan aku dah tak ada annual leave, kena distribute the appointments evenly supaya tak baca sangat kena potong gaji. Ada appointment yang mintak postpone.

 

Akan update lagi secepat mungkin.

Fw: Wrong method all this while !!

Assalamualaikum,

Pagi ni rasa kecewa. Why? Baru hari ni tahu, lepas tanya student pharmacist, tentang cara-cara nak ambil ubat Omeprazole. Ubat ni doktor prescribe untuk Afiq sejak dari kecil lagi untuk masalah clinical GERD (gastroesophageal reflux disease, atau bahasa kampungnya, jeluok susu), rasanya sebelum umur dia cukup sebulan.

All this while, misi suruh (tapi tak pernah pulak confirm dengan doktor) beri ubat ni sekali dengan susu. So, this instruction, we follow to the dot. And Afiq continued to reflux ('jeluok'). And then doctor increased the dosage. And Afiq still refluxed.

This morning, I was informed that this medicine should be taken at least 30 minutes before food. And when I googled the info on omeprazole, I found that the function and performance of omeprazole will be greatly impaired if the medicine is consumed with food in the stomach.

Wow!! So, all this while, we have been giving the medicine in incorrect method! So, okay, starting today, we will change to the correct method and see Afiq's performance. Thank you Izzati for the information.

Now, to think of all those experts (are they really experts?) in nursing (nurse, sister), pharmacy (regsitered pharmacist, PRP) and medical (HO, MO, doktor pakar, HOD paediatric), who gave me WRONG INFORMATION or who are negligence by not confirming that the parents comply to the correct method. The way I see it, negligence can be in 2 ways -

1) do it the wrong way, or inform others to do it the wrong way

2) does not do it (i.e. do nothing).

 

I'll update the status of Afiq using the correct method after 3 days

 

Wassalam.

Wrong method all this while !!

Assalamualaikum,

Pagi ni rasa kecewa. Why? Baru hari ni tahu, lepas tanya student pharmacist, tentang cara-cara nak ambil ubat Omeprazole. Ubat ni doktor prescribe untuk Afiq sejak dari kecil lagi untuk masalah clinical GERD (gastroesophageal reflux disease, atau bahasa kampungnya, jeluok susu), rasanya sebelum umur dia cukup sebulan.

All this while, misi suruh (tapi tak pernah pulak confirm dengan doktor) beri ubat ni sekali dengan susu. So, this instruction, we follow to the dot. And Afiq continued to reflux ('jeluok'). And then doctor increased the dosage. And Afiq still refluxed.

This morning, I was informed that this medicine should be taken at least 30 minutes before food. And when I googled the info on omeprazole, I found that the function and performance of omeprazole will be greatly impaired if the medicine is consumed with food in the stomach.

Wow!! So, all this while, we have been giving the medicine in incorrect method! So, okay, starting today, we will change to the correct method and see Afiq's performance. Thank you Izzati for the information.

Now, to think of all those experts (are they really experts?) in nursing (nurse, sister), pharmacy (regsitered pharmacist, PRP) and medical (HO, MO, doktor pakar, HOD paediatric), who gave me WRONG INFORMATION or who are negligence by not confirming that the parents comply to the correct method. The way I see it, negligence can be in 2 ways -

1) do it the wrong way, or inform others to do it the wrong way

2) does not do it (i.e. do nothing).

 

I'll update the status of Afiq using the correct method after 3 days

 

Wassalam.

Update status on Afiq

Assalamualaikum,

Sudah sebulan tak update blog berkenaan Afiq. Ada banyak perkara yang berlaku. Ada masalah yang tak masih tak sette. Letih!! Detail masalah/perkara/etc akan di update kemudian dalam blog ni.

Bagaimanapun, terima kasih kepada yang sudi visit blog ni. Dalam sebulan (sebulan yang tak update blog ni la), bila tengok kepada counter, sudah ada 200+ visits.

I'll try to update the blog at least starting from next week. Maybe on weekly basis.

 

Next week, 25th Jan, is date for Kimi's appointment with ENT dept at HKB. After that, I have to get appointment date for Afiq as well. Hopefully Kimi's problem of speech delay can be resolved starting from this visit. Cannot imagine him starting school (primary school) in 2014, but cannot express himself to the teachers and friends. Would be devastating. Although he is 'socially' still behind others, technically (academic wise) he is way in front of others. He's started to figure out reading simple words. Words that I or Ain have not taught him before. Imagine the joy when he's started reading some words in newspaper or magazine.

 

Wassalam.

Afiq pucat (17/12/11)

Assalamualaikum,

2,3 hari ni Afiq nampak stabil. Afiq sangat aktif sehinggakan tercabut wayar oxygen.

So, kelmarin, try off oxygen 24 hours.

Tapi petang, Afiq nampak pucat. Selepas cepat-cpat sambung balik oxygen, dalam 10 minit, OK balik.

Nampaknya tokleh betul-betul off oxygen lagi.

Hari rabu ni, ada appointment dengan pakar bedah, so mungkin boleh tanya 2nd opinion.

Secara logiknya, macam cleft specialist royak pada 5/12/11 baru ni, kalau oxygen level hanya 0.5liter, tak ada significant change daripada ambient oxygen level (oxygen dalam bilik).

 

Naim

Update temujanji di klinik dental, jabatan bedah mulut (12/12/11)

Assalamualaikum,

Hasil daripada temujanji di klinik dental, jabatan bedah mulut, pada 12/12/11, ada 2 output/maklumat penting.

1) Klinik dental akan terus monitor perkembangan pertumbuhan gigi Afiq. Memandangkan specialist cleft hanya akan tengok Afiq pada June 2012, makes no sense untuk klinik dental terus jumpa Afiq pada setiap bulan. Oleh itu, next appointment dengan dental adalah bulan June jugak.

2) Doktor bertugas ada sebut pasal ada kes-kes baby Pierre Robin yang tidak tumbuh gigi atau lambat tumbuh gigi. Perkara ni sedikit merungsingkan. Doktor pun tidak bertahu apa tindakan seterusnya. Aku pun tak tanya.

 

Takper. Nanti boleh call klinik dental untuk dapatkan confirmation.

 

Wassalam.

 

Update result appointment di HKB 05/12/11

Assalamualaikum,

Minggu lepas (05/12/11), Afiq ada 2 appointment di HKB

1) Klinik Pakar Kanak-Kanak

2) Klinik Gigi (Cleft Specialist)

 

Hasil daripada appointment di Klinik Pakar Kanak-Kanak:

1) Masalah jantung - berdasarkan scan (echo), masalah jantung Afiq semakin berkurangan. Doktor sudah downgrade daripada moderate PDA ke small PDA

2) Kebergantungan kepada oxygen - berdasarkan keadaan semasa, doktor sudah recommend oxygen level diturunkan daripada 1 liter kepada 0.5 liter

3) Masalah jeluok - doktor recommend tukar susu daripada Novolac AR kepada Dumex sebab Novolac AR tidak effective

4) Masalah jeluok - Afiq dah didiagnose ada penyakit GERD. So, kena maintain makan ubat anti reflux sehingga diberitahu

5) Masalah tangan dan kaki - doktor beri surat rujukan ke pakar fisioterapi

6) Masalah lelangit berlubang - kena jumpa pakar dental di jabatan pakar bedah mulut, esok 12/12/11

7) Masalah lain - dah dapat surat rujukan ke Pakar Bedah (Surgical Outpatient Department), 21/12/11

Kena pergi balik ke Klinik Pakar Kanak-Kanak pada 02/01/2012

 

Hasil daripada appointment di Cleft Specialist - > 10 specialists dok keliling Afiq.

1) Kena cari puting warna kuning sebab lebih lembut. "Fatwa" daripada doktor ni diragui sebab bila aku gasak sikit, material apa puting warna kuning tu, dia tokleh jawab. Sorang jawab latex, sorang jawab silicone. Conclusion: fatwa ikut sedap. tapi takper, kita akan try jugak suggestion doktor

2) Kena biasakan Afiq duduk meniarap

3) Operate Afiq boleh dibuat bila Afiq umur setahun

4) Sebelum operate, kena ada pre-assessment

5) Doktor tak suka cara orang putih buat dalam facebook - massage dagu. Kenapa? Tak suka lah !. Hahahahahaha. And you call yourself a specialist, doctor? Mesti ada valid medical opinion la doktor.

Next appointment: June 2012

 

Wassalam.