In the name of Allah; the entirely merciful; the especially merciful - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

Tuesday, 14 October 2008

Have you been frustrated at the way the hospital treated your child?



I have. NOW I am so frustrated with the way the hospital and health system work. And I want to do something about it. Just wait and see!

On September Muja had 2 appointments in one day. They were at two different places and the times are close to each other. I had to reschedule one of them.

Number one appointment was at Rehabilitation Mobility Clinic of Developmental and Rehabilitation Paediatric. I have rescheduled one appointment before because Muja was sick. If I have to rescheduled again for the second time I have to get Muja's Paediatrician re-referred to this clinic. So I though I better keep this appointment and reschedule the other one as it have no conditions for rescheduling.

Number two appointment was at Australian Hearing. I decided to reschedule for this appointment as this one is less complicated that the other. I called them for that and guess when did I get it rescheduled. FEBRUARY. Can you believed it? Muja hearing appointment is rescheduled from September to February NEXT YEAR!

Remember on May, Muja had her second sleep study done. The doctor from Respiratory Department discussed the result with us on June which shows that Muja has breathing difficulty during sleep because her tonsils blocked her airway. That is why she has trouble with sleeping. The doctor gave us two options whether to remove the tonsils or to use the continuous positive airway pressure (CPAP) machine. Muja's father and I decided not to remove the tonsils now but to try the continuous positive airway pressure (CPAP) machine to help with her breathing during sleeping at night.

The doctor from Respiratory Department said she would organised a machine for Muja or refer her back to ENT doctor for his advise regarding Muja's tonsils. But she picked to refer Muja back to ENT. The ENT was the one who refered Muja to Respiratory after he heard Muja's loud sound of breathing like snoring. We waited for three months to get back to the ENT which was on September. The ENT sent us back to Respiratory because we are firm with our decision.

Yesterday we were back at Respiratory Department. I thought in this appointment she, the Respiratory doctor, has organised for the machine but I was told that Muja needs to do another sleep study to try a continuous positive airway pressure (CPAP) machine. I asked to myself why she made this appointment only to tell us that Muja needs another sleep study instead of making this appointment as a sleep study?

This can only means another long wait because the waiting list for a sleep study is about 3 month from my previous experiences even though they said it is 8 weeks. So it will not be until FEBRUARY NEXT YEAR for Muja to get a sleep study appointment because we are going away during December and January.

Today I felt like what are these all about? I felt like the system of this hospital does not support Muja and her family decision to use the machine to manage her breathing difficulty. Here we have a girl who have problem with breathing since she was born and a mother who is sacrifice her sleep to make sure her daughter is breathing through out the night and all they can do is to place us in another long waiting list. Sometime I ask weather Muja has been discriminated against?

2 comments:

Amalina said...

Salam lightnur,
Amal notice Muja lalui pelbagai jenis treatment. Beruntung dia. Adakah treatments tu di recommend oleh dr atau lightnur sendiri yg cari? Seblm ni private therapy di Msia ada cadangkan HBOT treatment, tapi bila kami discuss dgn beberapa dr di gov hospital yg ada HBOT, mereka tak recommend treatment utk kanak2 CP. Tapi amal tgk ramai kenalan yg dptkan HBOT treatment ni tunjukkan result yg bagus. Teringin nk cuba.

Lightnur said...

Wa'alaikum assalam warahmatullahi wabarakatuh Amal

Terima kasih kerana membuat ulasan di sini.

Alhamdulillah Muja diberi kesempatan untuk melalui pelbagai jenis rawatan conventional mahupun alternative. Kebanyakkan rawatan tersebut dicadangkan oleh doktor dan ada juga yang saya sendiri yang cari, misalnya HBOT.

Alhamdulillah, dari pengalaman saya Muja menunjukkan perkembangan yang menarik dari HBOT. Otot-ototnya lebih lembut, kekejangnya agak berkurangan dan penglihatannya bertambah baik. Saya juga melihat yang dia lebih memperhatikan keadaan sekelilingnya maksud saya, dia tidak teperangkap dalam dirinya sendiri semenjak HBOT.

Bagi saya tidak semua rawatan itu sesuai untuk seseorang kerana ia bergantung kepada keadaan masing-masing. Buatlah kajian terlebih dahulu dan kalau boleh dapatkan nasihat dari mereka yang pakar dalam bidang tersebut sebelum mencubanya.

Selamat mencuba!