Andai itu takdirnya - Part 4

22nd January 2011

Another appointment with prof Lee. We were expecting good news from CT Scan and blood test. Prof Lee informed us that the result is in line with biopsy result..and her blood test shows that her hb is still low(below 10). Prof Lee also has reviewed the video and confirmed that it is crohn disease. He also asked us to get the slides from DEMC for second review at UMSC.

He has to start medication for Kakak. Kakak will be given high dose of prednisolone, mesalazine and supp for her low hb. He advised us to maintain a file for Kakak's medical report. Kakak is very disciplined with her medication which I will not have to worry and remind her every day. Kakak is very curious on what she has been prescribed and did some search on the drugs. She is full aware of the side effects and had prepared herself . She is a strong girl..

We have passed the slides to Prof Lee for second review and the result confirmed that it is Ulcerative Collitis not Crohn. However, according to Prof Lee, kakak still has to go thru the same medication. If it is crohn, then he has to add another medicine.

We informed Prof Lee that we are going to perform umrah in March. He advised us not to take kakak for umrah as she is on high dose of steroid and her immune system is low. Exposing her to crowds might expose her to virus and gems. After having some taughts, doa after doa and advise from friends, we decided to take her for umrah. If she cannot go, then all of us will not go.
Afterall, we are going to Rumah Allah..Insyaallah, Allah akan melindungi kami terutama kakak.

Kakak was on her last 2 weeks of prednisolone intake during our umrah. Alhamdulillah she was alright and only got some light flu few days before we came back to Malaysia.

Kakak went thru her second round of scope in June at UMSC. Alhamdulillah the result shows that all the inflammation are gone but the biopsy still shows that the 'thing' is still there. Prof Lee advise us to continue her medication for at least 4-5years. This is to prevent from recurrance. If she got another attack, means kakak has to go thru the same round of medication again (high dose steroid). Prof Lee actually was so amazed on her progress which he said that this is the first time he had a patient that can recover so fast. Praised to Allah..Alhamdulillah, thank you Allah..Allah has granted our doa..

Now we have to keep up our schedule with Ayah's and Kakak's follow up appointment.

Andai itu takdirnya - Part 3

Alhamdulillah Ayah dah recover, walau pun not 100% tapi sudah cukup menggembirakan kami. Life back to normal..sesekali family outing, ke pasar bersama, balik kampung.. Kami bercadang menunaikan umrah bulan December 2010 bersama anak-anak.


Kita hanya mampu merancang. Visa ziarah tidak dikeluarkan untuk bulan december 2010. Plan bertukar..kami ke Singapore bersama Kak Ani. Oleh kerana kami tak jadi menunaikan umrah, kami plan untuk buat renovation rumah.


Back from Singapore, kakak diserang diarrhoea (cirit birit). At first kami ingatkan biasa je sebab kakak memang ada acute gastrik dan memilih makan pulak tu. Maybe sebab kami travel dan waktu makan tak menentu yang buat kakak macam tu.


30/12/2010



Ayah bawa kakak ke klinik, Dr bagi ubat angin.


31/12/2010



Diarrhoea kakak is getting worse sampai kakak dah tak boleh jalan. Selepas solat Jumaat, kami bawa kakak ke E&A DEMC. Dr check, kakak ada demam, Procedure pada masa itu, kalau demam, kena buat blood test. Result blood test kakak memeranjatkan kami. Hemoglobin (Hb) kakak low...7.2. Normal should be 12 - 16. Dr admitkan kakak for further examination. Masa ni baru ingat, patut lah kakak selalu complain cepat penat..sigh!!


Kakak is having her first dinner at DEMC. Pizza hut Kakak was referred to Dr Nor Aziah. Drip was given to give her energy. Dr ambil darah lagi and sample untuk further test. Dr cadangkan buat Laparoscopy. We were introduced to Dr Lukman.

We were allowed to observe the procedures..nasib baik lah saya tak de hati nak jadi doktor..tak tergamak tengok (atau mungkin sebab anak sendiri). I then choose to sit at the back and observe from far..unexpected..tak sangka condition usus kakak begitu sekali..tak pasti apa termsnya tapi keadaan di terminal ileum merah2 (end of intestine) dan few parts dalam colon kakak pun merah2..Dr Lukman ambil sample untuk tujuan biopsi..

After an hour, kakak di sorong semula ke bilik..

Malam tu kakak baru ada selera makan. Kakak request nasi lemak.

Keadaan kakak kejap ok, kejap tak ok. Dr masih kira berapa kerap kakak buang air, color apa etc..sometimes kakak nampak fed up dengan soalan2 sama oleh Dr. Peranan saya ketika itu adalah untuk pastikan ada jawapan untuk Dr setiap kali Dr datang. Dr masih cuba untuk kenalpasti kenapa hb kakak low..di mana kakak hilang darah..since kakak pernah ada rekod irregular period dan pernah di referkan ke Dr Zamri, kakak kemudiannya di rujuk ke Dr Zamri untuk pastikan kehilangan darah bukan disebabkan oleh menstruations.

Bila kakak ok, laptop saya akan di hi jack oleh kakak. Sekolah sudah bermula..kakak missed her first week at school.

Result biopsi sudah di terima. Kakak was diagnose to have ulcerative colitis(UC).Ulcerative colitis is a type of inflammatory bowel disease (IBD) that affects the lining of the large intestine (colon) and rectum.

Dr Nor Aziah then refer kakak to Dr Geeta, pakar Gastro. He is new at DEMC and previously attached at PPUM. Dr Geeta tried to gather some infos from us, unfortunately he was not satisfied with our aswers. I was quite unhappy with him at first but we were ok on his 2nd visit. After reviewing the videos, Dr Geeta said he was sure that it is not UC but is actually crohn disease. Crohn's disease is a form of inflammatory bowel disease (IBD). It usually affects the intestines, but may occur anywhere from the mouth to the end of the rectum (anus).

Apa bezanya? How my daughter got it? The exact cause of Crohn's disease is unknown, the condition is linked to a problem with the body's immune system response.
Normally, the immune system helps protect the body, but with Crohn's disease the immune system can't tell the difference between normal body tissue and foreign substances. The result is an overactive immune response that leads to chronic inflammation. This is called an autoimmune disorder.

I did ask my friends who are in medical field especially Dr KD..she is in JB but she has been so helpful in explaining terms which I don't understand..I owe you my friend.

Kakak started to get bored staying in hospital for too long. I brought some of her school books for her to read. Her friends sent emails to update her on school progress and homeworks. She is in form 3 now and going to sit for PMR in September. We have to ensure that she is in good health by that time. We hope that her condition will not affect her studies.

At first Dr Geeta wanted to start with medication but he was also not sure because of kakak is still young. She is consider as children (still at growing stage).

7January 2011

Kakak was discharge and given MC until 10th January. On that day she is supposed to come back and start her medication. I did not agree on Dr Geeta's plan and request for second opinion. Dr Geeta than referred Kakak to his ex sifu at UMSC. Kakak was referred to Prof Dr WS Lee at UMSC.

I brought Kakak to Imij Saloon for hairwash since she did not really wash her body for the past 8 days due to ongoing drip. Treat her pizza hut before going to saloon.

10th January 2011

We took kakak to UMSC to see Prof Lee. He is actually a paediatric but has a lot of experience with crohn disease. He then set appointment for kakak to go thru CT scan at PPUM.

15th January 2011

Kakak had her CT scan at PPUM. Took us half a day to settle. Unfortunately kakak is allergy to iodine contra and she has to be given medication to help her for the allergy reactions. Due to that also, she has to be under observation and given nebulizer. :(

Kakak playing with her Ipod touch while waiting for her turn


Since she was very sleepy, Dr Lee cannot take her blood. And we have to come again next week for the blood test and CT scan review.