The days Muja at the hospital for PEG surgery.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

Muja is sleeping on my laps after the PEG surgery at PMH hospital.

Alhamdulillah Muja surgery went well. She took more time for recovery though, because she is special. But I think it was unnecessary because my lack of knowledge about side effects of medicine. She was in the hospital for 7 days because she started vomiting a day after the surgery. The doctor explained that her digesting is not back to normal after the surgery, that's why she vomited. The day she started vomiting, she chewed her mouth until it started to bleed. She kept on feeling the need to vomit even though there is nothing in her stomach to be vomited out. The nurse put a bag to drain her stomach through her PEG to stop her from vomiting. The medicine not only make her vomit but it also trigger seizures to Muja with uncontrolled movements of her mouth chewing, legs cycling and eyes twitching.

PEG on Muja's tummy.

On the third day she kicked the IV off her left foot. That night 2 doctors tried to place the IV without success because her veins are too tiny and crooked. The third doctor did on her upper arm which is not a good place for Muja because she bends her arms most of the time. I was sure that she won't be comfortable with it and the nurse had to tape and bandage her arm so tight that she could not bend it. Poor child.

She was on the IV drip and fasting for almost 4 days. When she was unsettled the doctor thought there was something wrong with the surgery and did an x-ray to find out what happen. Only after 4 x-rays the doctor came to the conclusion that there is nothing wrong with it.

I was telling them that it was normal for her to not be settle. She cried to tell me that she is uncomfortable with the IV on her arm. I knew that she was uncomfortable and her spasm is normal. Anyway every time Muja cried the nurse rushed to her ward and ask if she was in pain. That put pressure on me whether my girl is in pain or something else. During the day she took Panadol, Nurofen and oxycodine for pain relief. She was also on morphine. I am not a fan of this drug cocktail. I don't want her to be on any of these drugs actually. Normally when she is unwell I give her homeopathy remedy. She was fine with it and I don't have to worry about its side effect. With the pain relief that Muja took during her stay in hospital I found out that her vomits was a side effect of morphine from a friend who is a doctor who came to visit Muja at the hospital.

Muja's father giving her a wash at the hospital. She enjoys her father touch.

On the fifth day I told the doctor that Muja was unsettled because she is starving. Then they started feeding her. But that night her IV was blocked again. A doctor tried to put it in but could not find any vein in her hands. He tried the foot but she was so stiff and he decided not to do it. Another doctor from ICU came, who was the same doctor who did her last IV. Again he put it on the same place he did last time but on the other arm. I am so sorry that my child has to be put up with uncomfortable IV on her upper arm just above it. It was inappropriate place to be, especially because of Muja's nature of always bending her arms. Again she fight to bend her arm which was taped really hard on a hard board.

Alhamdulillah that night she was fine. The next day I told the doctor that I wish to go home by tomorrow if Muja tolerate her feeding. A dietician planned a feeding regime for Muja. She is on PadieSure 240 ml for 4 times a day. She told me to start it slow on her kangaroo pump. She was on 65ml/hour at the hospital. Alhamdulillah she tolerated that day and the next day we came home after organising a few things including feeding equipments, medicine and a nurse home visit to make sure everything goes well after discharged.

Muja is better but still fighting to bend her other arm with IV on.

At home that night she slept well and gave me a huge smile the next morning. Now I am sure that Muja was not in pain, at least after the second day of surgery, when she was in the hospital but she was actually not comfortable with the hospital environment.