Afiq status update

Assalamualaikum,

Dah 2,3 hari tak sempat nak update blog. Tak banyak nak update hari ini, cuma Afiq dah umur 4 bulan 1 Muharram baru ni. Afiq pun semakin berat. Kalu riba setengah jam, sero lenguh doh. Kali terakhir  timbang di Klinik Kesihatan 2 minggu lepas, ~ 3.7kg (umur 3.5 bulan). Minggu depan akan ke HKB untuk appointment, so mungkin boleh tahu berapa berat Afiq nanti.

So far, dah kurang occurence 'jeluok' tu. Kalu dulu, setiap kali beri susu, boleh kata 50 - 100% susu akan keluar balik (muntah/jeluok). Sekarang ni, boleh kata 0 - 25% susu akan keluar balik. Much improvement.

Pah tu, Afiq tiap hari nk meniarap, cuma dia tak reti nak pelepas tangan. Kalu kimi dulu, 8 bulan baru boleh bbalik.

 

OK, gambar terbaru Afiq tak ambil lagi. Rambut dah pendek sikit. Nanti weekend ni update lagi.

 

Wassalam.

Oxygen tank capacity (2)

Assalamualaikum,
Just to update on trial run on oxygen tank #2.
Capacity trial run conducted - result is similar. about 11 hours of usage with minimum travelling (minimum time spent on the road).
So, no more worry.

Naim

Oxygen tank capacity

Assalamualaikum,

Today;s posting is in English.

As preparation for Hafizah's wedding, I have done 2 things to enable me & family to attend this wedding, and after that, back-to-back appointments at different sections at HKB that occupy the whole day on 5th December.

Actions taken are:

1) Buy another tank (back-up tank)

2) Conduct trial run for tank capacity

Why all this? Well, all these are needed since HKB has directly told me that the oxygen concentrator machine is not designed for travelling. So, no more bringing back oxygen concentrator for weekend balik kampung trips.

Last weekend, in addition to purchasing back-up oxygen tank (RM300 in deposit, fully refundable once the tank is returned back to Gas Pantai Timur), I've done tank capacity trial to simulate the 2 events stated at start of this blog posting.

Why the trial? Contradictions in statement between oxygen provider (Gas Pantai Timur) and HKB. Gas Pantai Timur says a 5-liter tank can last for 8 hours while HKB says it is longer thank that (but HKB dont know how long. They never keep track but they feel that the figure is not right).

All this while, a full tank can last for 3 visits to HKB (weekly appointments), or about 6 hours. Last week was my thrid re-fill at Gas Pantai Timur.

So, to satisfy my curiosity, last Saturday, after refilling the tank, I went back to Tiong (together with Ain, Afiq and Kimi lah). We depart from Kemumin at 9.30 and arrive at Tiong at 10.00am (no traffic that day, usually close to 1 hour because I drive slowly, below 60kph). After 'parking' Afiq at Tiong, I went about my business, going to HKB to get medical supplies, went to Salor to see Ma, etc.

Normally, 6 hours of usage will see the indicator at "Refill". But on this occasion, at 4.30pm, when we are packing things into car to go home, the indicator is still at half full. So, after we got back to Kemumin, I decided to continue using oxygen from tank instead of oxygen concentrator machine to see how much longer it can last.

The result: nearly 11 hours of usage.

Anyway, I noticed 2 things different for this tank compared to other tanks used previously.

a) This tank was not filled in a hurry. I gave the company 3 days to fill it, compared to 30 mins for other tanks

b) Minimum travelling during use of this tank (about 1 hour of travelling), compared to almost all time for travelling (~ 6 hours) for other tanks.

That's the parameter we are going to use during the wedding. As for the back-up tank, we are going to test it too soon.

 

Wassalam.

Gambar di wad anggerik

Gambar di wad anggerik, selepas prosedur pasang gastrostomy button. Banyak lagi gambar, nanti share lain kali pulak.

 

Gastrostomy button (latest update)

Assalamualaikum,

Update 16.11.11. Dah lama tak update blog. Hari ni nak update sikit pasal gastrostomy button.

14/11/11 (Isnin) baru ni, pergi HKB untuk pasang Bard gastrostomy button pada perut Afiq, untuk ganti tiub catheter yang dia pakai sebelum ni. Objektif pasang button ni ialah senang sikit nk urus Afiq disebabkan oleh saiznya pendek (lebih kurang 2 inci) berbanding tiub catheter (lebih daripada 12 cm). Lagipun, tiub catheter ni sementara je, tak boleh pakai lama-lama pada patient.

Pukul 7.30 pagi dah sampai di wad Anggerik. Malangnya, sehingga dekat pukul 9 pagi, dok tunggu di ruangan menunggu dan tak ada orang layan. Sepatutnya beri katil ke, register ke, apa ke. Lepas doktor pakar tegur, barulah misi bergerak serta merta. Pukul 9.30am, bergerak ke dewan bedah fairuz untuk pasang gastrostomy button. Doktor tak benarkan parent masuk semasa di dewan bedah. Masa di luar dewan bedah, boleh dengar suara Afiq teriak. Tak boleh imagine kalau kena pada kita pun. Kepala gastrostomy button tu lebih kurang 1 inci, sedangkan saiz lubang di perut tu kurang daripada 1 inci. Doktor pun tak beri bius, samada GA atau LA.

 

Lepas keluar daripada dewan bedah, balik semula ke wad Anggerik untuk observation dan tunggu sister datang briefing pasal penjagaan button. Lepas dekat 2 jam, sister datang dan briefing 5 minit, lepas tu sister pun blah. Bila tanya detail, dia kata dia dah lepas tanggungjawab sebab button dah pasang. Dalam hati tertanya-tanya, siapa yang buat observation ni? Apa yang nak di observe? Dalam 2 jam tu, tak ada seorang pun misi atau doktor (selain daripada sister yang briefing pasal penjagaan button) yang datang untuk tengok keadaan Afiq. Takdok siapa nok caro.

 

Letih menunggu, pukul 12.30 tengahari, aku discharge diri sendiri. Lepas royak sepatah kepada staff nurse bertugas (SN Ainun), terus bawak Afiq balik.

 

24 jam pertama guna button ni adalah saat yang paling letih dan lenguh. Pertama, sebab tiub yang lebih pendek, jadi lenguh sikit nak pegang tiub lama-lama. Kedua, susu masuk slow sangat. Ketiga, mungkin sebab shock dengan alat baru, Afiq jeluok tak habis-habis. Payah sikit nak manage pakai button ni sebab bila Afiq jeluok, walapun kita clamp tiub untuk pegang Afiq, susu akan tumpah daripada tiub. Keempat, kena handle betul-betul semasa cabut tube daripada button sebab kalau tak careful, habis kena susu pada perut Afiq dan basahlah dressing.

 

Nanti esok upload gambar semasa di wad.

Wassalam.

Oxygen concentrator (sambungan 2)

Assalamualaikum,
Sambungan cerita oxygen concentrator.
Hari Khamis lepas, aku ada kecek dengan chargeman di company (tak bekaitan dengan kerja-kerja wiring di rumah aku) dan mintak pendapat pasal masalah alarm pada oxygen concentrator. Setelah beri semua details, pendapat dia satu je - api incoming daripada TNB tak cukup. Memandangkan sebelum ni takde masalah, chargeman ni royak mungkin ada org guna api lebih daripada sepatutnya yang digunakan di rumah-rumah, contohnya ada orang buat kerja-kerja welding di rumah. Memang betul la. Tuan rumah aku (sebelah rumah) baru-baru ni ada buat kerja welding, buat penyidai kain. Sebelah rumah dia pulak, orang buat body kereta. Selang 2 rumah lagi pulak, orang buat kerja-kerja besi (macam buat grill rumah, etc). So far, semenjak pakai mesin baru ni, hanya sekali je keluar alarm.

Wassalam.

Afiq with Mamatuk & Hakimi

Photos of Afiq with Mamatuk & Hakimi. Afiq dah mula nk bbalik, nk duduk meniarap.