We have a surgery date

We have a surgery date, its 9th Oct. A week after Hari Raya. Hari Raya is going to be very different this year. Its going to be us waiting in anticipation and worry for the date. Will try to keep her home and away from crowds and kinds.

She is well right now and hopefully remains well till surgery.

We just found out that the cardiologist will usually recommend the elder sibling to be off school for 2 months co'z that's where the infections will come from. Thank goodness school ends in a month. I gave Alysha the option of going to school and stay at her grandma or off school and stay at home. She wants to go to school. She must really love this school and her friends.

Please keep her in your prayers and pray that we all have the strength to see this through.

Postponement of Surgery

Sorry for the delay. Things are little chaotic. Inarah is still not recovered from her very bad bout of infection. Had to go see Dr. Lim for another round of antibiotics.

So this is really a continuation from the last post and I have to apologize to some who thought that we proceeded with the surgery.

The nurse came every ½ hour to check on her leg coz they could not feel a pulse on one of her feet. Then Dr. Lim came in a rush which alarmed me immediately, I think it was 1 a.m. He said they are going to put her on “heparin” as she seem to have a clot somewhere in her leg and they cant feel her pulse on her feet. Her right foot was cold. If heparin does not work they have to put her on another medication (just can remember it now) which will thin her blood and open up her veins. If they need to use that medication, surgery is off for 3 weeks at least.

If heparin works, she will bleed at the spot where the vein is punctured and that’s good news. It means the blood is flowing well.

Of course we were not supposed to sleep that night and watch out for the bleeding upon which they would stop the medication. I could not have slept having her in that condition anyway. Heparin was supposed to be on for 24 hours.

But after 8 hours and no pulse at the feet still Dr Lim decided to proceed with the 2nd medication. He looked at me or rather the state of me and decided to put her in the high dependency unit so that there was a dedicated nurse for her.

16 hours later, per pulse was back and strong as in the left feet. We were back in the ward and Inarah was back being herself. Surgery was off. We were discharged after 3 nights. And then next day she catches a horrible infection, fever, cough, lots and lots of phlegm that made her vomit every time she coughed.

So here I am thinking surgery would have been off anyway with this kind of infection. It’s just meant to be. Now we have to get another date. And I would like to wait till Dec if possible coz we have a religious thing in Nov possibly.

But while she was ill in this past week, she has been so frail and tired at times with her finger nails showing blueness.

So here I am in a situation where I have to now decide again whether to proceed with surgery right after raya in Oct or wait till Dec.

She is recovering better now, no more fever. It’s just the cough that will hopefully start subsiding with the new anti biotic.

Thanks for all the prayers and concerns that I have been receiving through SMSs and e mail. Please continue to keep her in your prayers. Will try and post some pictures of her after the procedure when she was in high spirits. That’s all me managed to catch.

It finally here-Cath and Surgery date

It’s finally here. Inarah’s surgery or rather it was here. We had to postpone it. I know it's confusing. Please bear with me. I'll start from the begining. I did not blog about it earlier coz I just could get myself to do it yet, I think.

Inarah’s cardiologist finally said very firmly, fix a date for surgery. It’s no point waiting. Her heart is ready-fully developed.

We had a date for surgery for the 5th of Sept and for the cardiac cath on 3rd. And then we were all preparing for it, mentally and emotionally, or rather thinking that we were preparing for it. But you can never prepare for something like this, especially if it’s our first time and we have no clue what to expect.

Did all that I need to do. Made arrangements for mom to sleep over, drive Alysha to school, got my leave papers approved. Met up with the surgeon for a chat.

Nice guy, Lee Weng Seng, in his early 50’s but looks much younger. It was an interesting meeting. We walked in and he said “yes, what can I do for you ? Looks like a straight forward case, what do you want to know?”

Of course, we wanted to know everything. But I didn’t know where to start. After warming up bit, he started talking. Giving us statistics on why we should do the surgery now and not wait any longer, talking about brain abscess and other risks. Then telling us what to expect after surgery in terms of recovery. It was a very short meeting, less than 15 min at the end of which I don’t know if I felt any better about the whole thing. But it was sure that we just have to go ahead with it this year.

Hospital called on the 26th and said we can do the cath on the 28th. Called my Suben and he said it’s too soon and I said yes, I agree. But both of us knew that it was not. We had a day to digest it and Inarah was well, so it’s the best time to do it.

Got admitted by 1p.m.. Had to keep her off food and drinks which was okay and she had a good meal before that. I left the room when they put in the IV line. Suben stayed. She did not even flinch. Just smiled at Suben when it was done. And from then, I knew this little girl is going to be the bravest, strongest girl I will ever know.

Took her to the OT for the cath and good thing the anesthetist let me in. For a while she looked like she was going to tear when she thought I was going to leave her there. They let me put her on the table and hold the mask on her. In less than 20 sec she was out.

It took an hour for the cardiologist to come out and tell us that there were 2 other narrowing that the echo did not show and that the surgeon will tell us tomorrow how he plans to do the surgery. I could hear her crying for me after a while. It was horrible. She must have felt so confused once she came out of the anesthetic. The minute I went to her, she asked me to carry her. I was so afraid that I might hurt her. But they told me to go ahead. I carried her to the room and she cried to sleep.

She woke in 2 hours or so asking for milk and water and cried herself to sleep again when she realized she was not getting any for a while. Somehow, even though she was groggy and all she understood after a while when I told her that she has to wait to drink or eat. After a while, she just slept which made it easy for all of us.

Once she ate and drank she was in good spirit and back to her normal self and I was amazed by the fact that she was just so okay, happy, just her cheerful self again. It’s amazing how strong she is. It puts me to shame.


Now that I am writing this, I feel I can talk about it without any emotions. But the feelings involved are indescribable. I was scared then angry then calm and then nothing for a while and then when I saw her crying after the procedure, I had to hold back my tears and be strong for her.

One thing for sure, I am so glad she is 3 months short of being 3 years. I really don’t know how I would handle it if I had to explain to her why is this all happening to her. Why does her heart need fixing.

I’ll post again on what happened next.