12 Jan 10

12 Jan 10
We got Pastor Timothy from our church (Yishun Methodist Mission) to go to the hospital to pray for Charlene. He also put anointing oil on Charlene.

11 Jan 10

11 Jan 10

I dreamt last night that MRI scan showed that NO damage to Charlene’s brain.

We had a family conference tonight. We laid out the options to mother, father and brother.

1.      Surgery now (face op risk)

2.      Discharge now with normal tube feeding (face risk of choking)

3.      Discharge now with continuous feeding (safer option but not good for Charlene’s long term development)

4.      Keep her in hospital (and pay enormous hospital bills)

My father in law is too optimistic and do not see a problem in taking care of Charlene at home. My mother in law is too scared (her response made us so disappointed) and just wants to keep Charlene in the hospital without considering the bills. In the end, we decided to wait and see (till my Medisave gets wiped out). Mainly of his mum’s reluctance, Dez don’t want to bring Charlene back. Also, with 2 persons (me and father in law), each taking 12 hour shift is crazy. Especially if she is on 2 hour feeding, by the time the medicine and milk is prepared, it’s time to feed again.

8 Jan 10

8 Jan 10

We were told that the operation risk has increased significantly as Charlene is small and below 5kg. If Charlene is above 5 kg, the risk is only that of an appendix operation but now the risk is like a caesarean operation. Charlene would have to undergo general anesthetic and be on the ventilator for at least 5 days. Dez and I don’t know whether to go on with the op and put Charlene through the op risk.

The doctors however think that it is a risk that should be taken as compared to the acute life threatening episode (choking) if the op is not done.

6 Jan 10

6 Jan 10

I asked the physiotherapist regarding Charlene’s progress and was surprised to hear that Charlene’s progress is on track with her developmental milestones. Right now, Charlene is learning to feel her own hands and to look up and focus on the ceiling/ sit and look straight. Charlene’s tracking and focus is still not too good but it is slowly improving. She is also learning how to turn her body. Praise the Lord! It’s great to know that Charlene is learning!

5 Jan 10

5 Jan 10

I am still not sure and bothered as to how to take care of Charlene and whether I am able to. Also unsure if my parents in law are able to. The feeding tube is one issue but what is worse is the choking incident. Am I able to revive Charlene at home?

After talking to Dr Tan, I am still unsure of whether to send Charlene for the operation. One thing I learnt is even if I have faith that God will save Charlene each time, each of those choking incident is itself an insult to Charlene’s brain.

  

And it’s not just me who is unsure. The doctors are unsure initially too. Cos of her poor prognosis, they initially didn’t want to suggest the op as they thought that Charlene would go soon and want her to be comfortable. However, again and again, Charlene exceeded the doctors’ expectations (Praise the Lord!) and they have since revised their treatment perspective of Charlene into a long term outlook which is why they are now suggesting the operation (good for Charlene’s long term progress and our management of her).

The “Button” operation would make managing Charlene easier and safer.

§         Don’t have to worry about insertion of tube and whether tube is in stomach (very important cos if tube is not in stomach, can cause aspiration).

§         Would greatly reduce the choking incidents and reduce extent of reflux

§         Removal of feeding tube would allow Charlene to resume her oral exercises (e.g. learning how to suck and swallow) which is crucial for normal feeding in long run

Thus it seems like Charlene should go for the op. 

4 Jan 10

4 Jan 10

Dr Tan explained to me how the operation would reduce the reflux (besides the button which make feeding direct to the stomach, fundoplication would help close the gap and reduce reflux). The shocking news was I heard the doctor who was doing her rounds said that Charlene has 3 choking episodes. Dez and I are only aware of 2.

Charlene choked for the 3^rd time and God saved her for the 3^rd time. It’s like God is telling me not to worry and continue to leave Charlene in His hands.

2 Jan 10

2 Jan 10

Sister Chew took a car seat and the 2 nurses put Charlene on to the car seat. She looked like a queen on the throne.

Thank God for blessing Charlene with strong neck muscles for she is able to turn her head (even when lying on tummy) and even lift her head by 45 degrees.