30 Jan 10

30 Jan 10

Charlene was still crying loudly and pitifully when we reached. Her feeding tube has been taken off and she was fed 10ml of milk through her button for a start. After 2 feeds, she was more satisfied and didn’t cry that much. She had 1 super-frown though.

I prayed to God that Charlene can pass motion (cos she hasn’t done so since she went for op). This was answered immediately. Before we left, Charlene passed motion.

29 Jan 10

29 Jan 10

Dez decided to fast for 1 meal (lunch) but he forgot to pray before he starts. So despite having breakfast at 9am, he was hungry at 10am. We also think that our fellow Christian friends were not praying for the fast, so he had less spiritual support.

When we saw Charlene, she was already taken off the respirator and was breathing well on her own. Praise God!

But probably because of pain, she was crying so loudly and pitifully. We tried all methods to pacify her but she was inconsolable. Dez prayed for peace and calm for Charlene and that Charlene be blessed with good nurses who have the insight and wisdom to make her as comfortable as possible. Almost immediately, his prayer was answered as the nurse decided to give Charlene panadol to relieve her pain. Charlene calmed down after taking the panadol. Praise the Lord!

28 Jan 10

28 Jan 10

Ah Sang met us specially at KKH Mac at 630am. He said that this date was of special significance to him as 10 years ago, on this date, Wei Yang collapsed. He shared with us many Bible verses and encouraged us to continue to build our faith through reading God’s word and to share our testimonial of God’s grace and mercy to others so as to expand the kingdom of God. After praying for us and Charlene, he left for work. We thank God for Ah Sang who we know understands how we feel (cos he’s been through it) and have been consistently encouraging us on with God’s word. We know that God sent him as a support to us.

We saw and prayed with Charlene. While waiting to be pushed into the operating theatre, Charlene showed a super-frown which shocked the junior doctor (also involved in the op) who was waiting with us. Charlene was pushed into the operating theatre at 8.30am. After praying together for Charlene, I went to express milk and take breakfast while Dez continued to pray and meditate on God’s word. When I returned, we read God’s word together and prayed together.

When I was expressing milk halfway at 12.30pm, the surgeon called and said that the op has ended. It was direct and they managed to do the keyhole procedure. Praise God!

Charlene came back to NICU and the anesthetic doctor stayed to monitor her while the nurses fussed over her. Blood tests and X-ray were taken for monitoring purposes. Doctor said she was stable throughout the op, she didn’t lose much blood and didn’t have any super-frowns. Thank God for his immaculate timing to let the junior doctor see the super-frown so that the surgical team knows exactly how it would be like. It’s amazing that for 4 hours during the op, Charlene didn’t have any super-frowns at all.

We thank God for being with us while we were waiting, granting us peace. Also, thank God for granting Dez strength though he didn’t eat anything from 12 midnight to 8pm. Thank God for the people who prayed for us.

27 Jan 10

27 Jan 10

Dr Gomez (senior consultant i/c of Charlene for the month) spoke to us today to give us an overview cum update of Charlene’s condition. He was very patient and gave a very detailed explanation of Charlene’s condition. He said that Charlene’s super-frown is a classic Sandifer’s syndrome and is not associated with seizures. Also, Charlene’s heart rate plunged without the O2 dropping. For seizures, the O2 will plunge first, then causing the brain to shut down which consequently cause the heart rate to drop. So as the order of events is reversed, Charlene’s super-frown is unlikely to be seizure-related.

Thank God for sending Dr Gomez to explain this to us! I’m now very certain that Charlene’s super-frown is not seizures-related. Also, we thank God that the KK hospital was competent enough to diagnose the Sandifer syndrome correctly. It would be easy for them to diagnose her super frown as seizures which would have delayed the reflux treatment. Also, we are glad that the super-frown first happened in the hospital because the monitoring device is the key for correct diagnosis. Thank the Lord for his grace in arranging the treatment process of Charlene.   

Before Dez started his fast, I told him to pray to God following the principle of ACTS – Adoration, Confession, Thanksgiving and Supplication.

25 Jan 10

25 Jan 10

Charlene is a very strong kid. She was poked several times for blood tests and yet she did not make a single cry. The most she did was to grimace. It was so amazing that the mother of the neighbouring baby praised Charlene! A little STRONG beauty truly!

24 Jan 10

24 Jan 10

Today is the first time that Dez saw Charlene controlling her super-frown to the extent that her breathing became very shallow and quick. She breathed so quickly in the manner of Liang Po Po ; it was kindda scary. I have seen this reaction a few times when I ordered Charlene to control her super-frowns.

Dez said that this Liang Po Po style of control is the strongest evidence that the super-frown is not seizures. There’s no way that Charlene can control her seizures if it happens. So whatever the cause of super-frowns, Charlene can control her response to it so it’s definitely not seizures. Hallelujah! Praise God!

23 Jan 10

23 Jan 10

The doctors attributed the super-frowns mainly to reflux and didn’t say anything much. We formed a few hypotheses ourselves; feeding tube is bigger which caused more throat irritation or reflux is causing more damage or Charlene’s swallowing has regressed, she cannot swallow her salivia, causing more phlegm to accumulate or she’s irritated.

In the hospital, Dez prayed to the Lord that the Holy Spirit be with Charlene and to chase away the evil spirits inside her. For a few moments, she seems to be responding well and could control her super frown. But after that, she has another episode and the nurse suctioned her. All of a sudden during the suction, Charlene coughed out 2 large mass of gooey milky-white phlegm. That shocked us because the nurse has been doing suction the whole day and couldn’t get the phlegm out. Dez felt that the Holy Spirit is chasing away the evil spirit residing in Charlene and hence she coughed out the phlegm.

The nurse also taught us how to do hands and legs exercises for Charlene. She seemed to enjoy the exercise and is alert. But she tires out after 30 mins of simulation and falls into a deep sleep.

21 Jan 10

21 Jan 10

The frequency of Charlene’s super-frowns is scary. Though the duration has shortened and her recovery is very fast, it’s still a concern to us. The doctors were notified. Nothing much they could do, they attribute it largely to her response towards the pain caused by the reflux and said it should go away after the op. We pray that with the op, the reflux and the super-frowns would be eliminated from Charlene’s life forever.

19 Jan 10

19 Jan 10

To prepare for the op and ensure that Charlene would not have those choking episodes, she was transferred back to NICU. It was obvious that Charlene is really unhappy. She was sulking.

The surgeon spoke to me regarding the op; the risks involved the procedure and the complications. She said that they will try the keyhole procedure first as it is less invasive. However, as Charlene is so small, technically it would be difficult. In the event that the doctors think it would endanger Charlene’s life, they would switch to do an open op instead. We sent sms to our friends to get them to pray that the keyhole procedure of the op can be done successfully.

18 Jan 10

18 Jan 10

Charlene had another bad choking episode. This is the 4^th time God saved her. We decided without hesitation that we should send Charlene for the op.  

15 Jan 10

15 Jan 10

Charlene performed a ¼ turn. We were really amazed. She was super determined and tried very hard for 20 mins before she did it. Once again, we thank God as it is evident that Charlene has the capacity to learn!

13 Jan 10

13 Jan 10

The consultant in charge of the month, Dr Gomez came to speak to me. He said that he will speak to senior surgeon to review operation procedure, risk and success rate. He re-emphasized that operation would reduce reflux, reduce chances of choking greatly. Leaving Charlene as she is now exposed her to the risk of choking and aspiration, pneumonia and chest infections.

He also said that he is monitoring the super-frown (which started on 11 Dec and will happen on average twice a day, the pattern is also evolving). He explained to me that the super-frowns are related to reflux and not seizures (but I am too stupid to understand what he is saying).

Then he said he was one of the first who noticed Charlene’s jitteriness on that first morning. He said he was not sure it’s seizures and thus put Charlene on the EEG. The EEG results showed the worst seizures he had ever seen in his 30 years of doctor career. It was so bad that they called the previous head of neurology back to discuss the case. Praise God that the seizures are kept under control with one medication!  

Charlene is really a strong kid. We saw the nurse doing suction on her. Though she flinched a little, she was quite calm and did not cry. At the end, we saw tears in her eyes. Other babies would have wailed throughout the suction.

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.