30 May 10

30 May 10

While Dez is at the hospital, I went for service at BRMC with my bro-in-law. It was a good time with the Lord.

And Praise God! Charlene was discharged today.

Praise God too for Charlene is gaining weight. She weighs 5.945kg today. An improvement of 500g in 2 weeks.

28-29 May 10

28-29 May 10

Charlene was supposed to be discharged today (28th) 1pm. Unfortunately, she started having the episodes again in clusters. According to the neurologist's notes, she is considered stabilised and can be discharged only if the episodes are less than 5 a day.

On the 29th, Dez took the morning shift and then I went at 2pm and told him to go home and rest. After he left. Charlene had many episodes so much so that I got really affected. I felt as though it was me, my incapability to take care of her that resulted in that. And my fil would always rub salt in the wound by saying that during his shift, she is v good. The devil is not only attacking my faith but also my confidence level.

26 May 10

26 May 10

The 4th new anti-convulsant medication was added today. Charlene had only 2 episodes. Thank God for the nurse on duty today who persistently called the speech therapist. For the first time, Charlene tasted food (infant brown rice) through her mouth. The speech therapist said that Charlene could swallow quite well. Praise the Lord! Once again, when we feel down, God will lift our hearts and give us something to rejoice and be glad of.

She said we could train Charlene twice a day for 10 mins each. In the future, we could replace some milk feeds with these cereals. However, she thinks it would be some time before Charlene can be bottle-fed as her latching and sucking and positioning of the tongue needs to be improved.

Lord, we pray towards the day that Charlene can eat all her meals using spoon and that her button can be closed forever.

24 May 10

24 May 10

Today was a bad day. Charlene had many episodes. And they were quite clustered together; 19 episodes in 5 hours. At 2+pm, Dez told the doc (apparently a housemen) but no action was taken. The docs did their rounds and were 2 beds away from Charlene when she kept having the episodes. Yet nobody attended to her. Finally at 4, the medical officer came and said that she was not informed. She ordered for IV lorezeprene (some temporary med to stop seizures). At 5, the doc wanted to give her additional dose of phenobarbitone through IV. Then they discovered it was leaking so they have to replace her IV plug.

Whenever adversity strikes, the devil would make use of the chance to hit us further. Again and again, the devil makes use of people around us to test our faith. The people around us would want to do their own religious stuff to help. While we appreciate their thoughts, our faith in God will never waver and we will worship God alone no matter what the circumstances are.

After the med went in, Charlene slept through the night.

Pastor Tim went down at 10pm to pray for Charlene and for me.

23 May 10

23 May 10

I asked Dez not to go down to the hospital and to recuperate at home.

Charlene heart rate was consistently high throughout the day, over 170bpm. Not sure why this is happening; have informed the nurses and the doctors but they haven't come to take a look.

At abt 4pm, Charlene started crying again! Praise Lord! Our fussy crying Charlene has come back!

Now it seems like a recurring pattern. She will cry and her button will start to leak, but the no of episodes will be very low. After a few days of crying, she will suddenly stop, with a corresponding increase in episodes. Though its hard to handle her when she's crying, we obviously prefer the crying Charlene. We pray that the pattern will stop at the crying-and-low-episodes Charlene.

21 May 10

21 May 10

Charlene slept soundly through the night (from 12 midnight) and day. She was awake for a little while in the morning but I was too tired to play with her. There were times she looks like she wants to cry but she can't.
Then the doctor said they want to send her for an ultrasound to see her kidneys. After asking, I was surprised that Charlene had previously done this ultrasound and that the tube linking to her kidneys was a little narrow/dilated? Nobody ever told us anything regarding this. Anyway, thank God that this time round, the results came back normal -- no dilation of the tube.

The neurologist decided to increase the dosage of one of the current med and to observe over the weekend. Thank God that Charlene had only 5 episodes today.

Charlene was transfered to general ward.

18-20 May

20 May 10

At 4am, I woke up to go toilet and was shocked to see the bottle of milk that was being heated. It was only around 15-20ml. I was so sick so I didn't measure the milk in the fridge to the exact amount (50 ml) that Charlene is supposed to be drinking. I can't believe that my fil is not using his common sense. I woke Dez up to inform him. He apparently told his father off and their conversation ended up in a big quarrel awaking the whole family. Charlene was obviously affected and started having many episodes.

By 4pm, Charlene already had more than 30 episodes. We have no choice but to send her back to the hospital. We told the nurse at A&E that Charlene had breakthrough seizures. Charlene didn't have to wait to see doctor. I was told to carry her to a private room and many doctors and nurses came dashing in and did many things on Charlene (insert line, take blood for tests, hooked her on monitoring) etc. Cos she had so many episodes, the doctors were very concerned and sent her to high dependency ward for observation.

19 May 10

My mother-in-law's diarrhea is under control but she was very weak and tired. Dez took leave to help out. In the morning, I was ok then the fever came back in the afternoon and refused to go away. Yet, I have to continue doing what I have to do till evening. I went to the doc who was shocked by my high fever of 39 deg and told me to rest for two days. After taking the med at 8pm, I went to sleep. My father-in-law woke me up to make the milk and med at 12 midnight. I made it, left it on the table and went back to sleep.

18 May 10

My mother-in-law vomitted twice last night and again this morning after breakfast. I am fatigued and my whole body was aching. The situation got worse in the afternoon when my mil started having diarrhea continuously and totally could not help out in taking care of Charlene. Despite me telling her to go to the doc, she didn't do so until 5 hrs later. After Dez came back, I started running a fever. I was pissed cos I still couldn't rest. My fever was on and off through the night.

Thank God that Charlene had zero episodes today!!!

22 May 10

22 May 10

Dez took the morning shift to allow me to get some rest. He called back at 1130am, saying that he's feeling feverish and is having diarrhoea. We managed to get my bil to swap with him so that he can come home to rest.

After reaching home, we tested Dez's temperature and he was running a fever of 38.8.  The doctor said that he is inflicted with bacteria food poisoning.

When I reached in the evening time, Charlene's no episodes have hit more than 20. It steadily increased from once an hour, to once every 15mins.  My cell group leader, Bernard and Christine, who came to visit Charlene saw 3 episodes during the short 30mins that they were there.

The doctors decided to give her an additional dose of phenotyl, which has both anti-convulsant effect and sedative effects. Subsequently, she slept throughout the night.

17 May 10

17 May 10

Brought Charlene to the hospital for her eye checkup and surgeon appointment. Praise God that Charlene's eyes are structurally ok. Whether she can perceive objects visually, it really depends on her brain devt.

Charlene's button was leaking badly, similar to the leakage in her 1st week back home. The surgeon looked at her button and said that she can't do anything about the leak. But thank God that Charlene's no longer has hernia and surgery is no longer required.

The surgeon suggested putting a diaper near the button to absorb the leakage. I tried, but the diaper was too big; I'm using a sanitary pad instead. Dez joked that Charlene's the youngest girl alive to be using a sanitary pad. =)

Charlene's episodes suddenly increase today. It was especially dismaying after a good day yesterday. It doesn't help when Charlene's button is leaking, and she's coughing and sneezing. The cough and sneeze is a concern and the neonats asked us to admit her to a&e to do a chest x-ray.

We were reluctant to admit her to a&e bec we know how useless it is to check her in. The doctors won't/can't do anything; they are most likely to just put her under observation, which will subject her to unnecessary infection in the hospital. After some advice from Dez's colleague, we got our family doctor to give Charlene a check. Thank God that Charlene's airways are clear, and will not need a chest x-ray.

Lord, we do not know what's happening to Charlene's yo-yo condition, but we trust in You and cast all our anxiety on You. Lord, please grant us strength and peace to tide us through this period of affliction.

16 May 10

16 May 10

Praise the Lord! Charlene had a significant reduction in the frequency in episodes. Somehow or rather, Charlene always have less episodes on Holy  Sunday.

Replacing the episodes are frequent cries. She keeps crying and crying and we do not know what she wants. But we are grateful to God, because our crying Charlene is back at home. We remind ourselves to be thankful in our heart for the grace showered upon Charlene, even though it can be trying when she keeps crying and crying.

Something funny happened at night after feeding her. Dez were singing "Jingle Bells" to Charlene in the cot. All of a sudden, Charlene poo-ed with a loud "put" and immediately after, she merlion-ed so hard that her milk shoot out, into the mouth of Dez!  The 2 of us were laughing merrily at our little girl's feats of strength =)

13 May 10

13 May 10

Praise God!!!

Dez and I have been very troubled over whether to give Charlene steroids. I prayed to God and told Him to give me a really clear signal as I am an idiot and a stiff-necked person like the Israelites.

God responded! It was so amazing. Charlene suddenly could cry normally again. She cried harder when she is put down. Previously, we hypothesized (based on our observations) that Charlene would have less episodes when she was crying. And true enough, Charlene didn't have any episodes for 22 hours! With the frequency of the episodes falling significantly, there is no longer the need. for steroids.

We also learnt to treat each day with thanksgiving,. Few weeks back (see 17 Mar 10 post), we were upset with Charlene's constant  non-stop crying. But after she stopped crying, we were worried when she would start crying again.

So thank God for his Providence! We will treasure each day as it comes, and trust that the Lord will provide for us in ways that we do not understand, but is ultimately for the good of us. Amen!

12 May 10

12 May 10

Praise God that for the past few days, there have been fewer episodes at night (12 midnight to 7am). But the frequency has yet to go back to the baseline of average 2 a day.

This morning, Charlene kept sleeping. She was awakened cos the doctors wanted to draw blood. During bathing, she started to sob and whimper. The nurse was rather amused. She said that Charlene sounds like she is learning how to talk and complain.

Then she started running a fever and started crying normally on and off for 3hrs. Thank God that she is crying; we haven't heard her cry for a long time!. Prior to the fever, there were very few episodes. Praise and Thank God! We are concerned that the fever might trigger off more seizures, so we kept sponging her to reduce her temperature.

The diarrhea is getting better but she has not fully recovered. We are still stuck and don't know what choice to make (steroids or no additional medications).

7 May 10

7 May 10

This morning, I ran out of ideas what to eat for breakfast so I thought reach KK then decide. There, I had Mac $2.50 breakfast. While I was eating, I was still thinking to myself to contact Charlene's neonate doc so as to get a letter from her for Dez's NS deferment. As I was about to leave Mac, the neonate doc appeared in front of me. I told her about the letter and updated Charlene's condition to her. I also told her that I would like a second opinion of Charlene's brain condition. She was very helpful and said that she would check it out for me. Thank God for her!

Ever since the video EEG, Charlene has been having more episodes. She has it like every hour and the predicability and accuracy of the timing makes it scary. Her diarrhea has yet to recover and looks watery. I wanted a doctor to come in to check but there was none.

The neurologist came and asked for our decision. I told him we are undecided. He said no pressure but better decide by noon as it is not advisable to change med during weekends. But so difficult to decide.

In the afternoon, the dietician came. Though she couldn't help much, she came all the way to check on Charlene and answered my questions regardung breast milk.Then a small doc came in. I thought he wanted to check on her but no. He came to relay a message.

5 - 6 May 10

5 - 6 May 10


On the 5th, the doctor suddenly tell us that that he's getting Charlene to do the EEG monitoring. Not surprisingly, they got hold of the monitoring room on the same day that the doctor requested it (in contrast to the previous doctor who took more than 2 days to confirm).

The EEG monitoring essentially monitor Charlene's brainwaves continuously along with video recording. Whenever Charlene had an episode, we are required to press a button to signal the start of the episode. Dez had to take leave and stayed over the night to help out in the EEG monitoring.

It was obvious that Charlene was upset with the electrodes; she couldn't sleep the whole day and night and she had so many episodes that she broke all previous records. So the doctor got his EEG records, but besides telling us that it confirmed the episodes as seizures, there was no other valuable information that can be gleaned from it.

The doctor gave us 2 options:- to add a new anti-convulsant medication or to add steroids. Anti-convulsant might not be effective bec she had already tried many medications. Steroids will stand a higher chance to be effective but has many side effects, out of which a major concern is the suppression of her immune system.

The last option we can take is not to do anything and to accept the current situation as baseline.

Lord, we pray that You grant us wisdom and guide us to make the correct decision for Charlene. Lord, we know that You work for the good of those who loves You, and we trust in Your plans and Your will.

2 May 10

2 May 10

Dez was doing night shift when Charlene had 2 more serious episodes. She was trembling more than usual after her typical cries. The doc came and wanted to give IV phenotyl (a new drug). Dez told him our concerns abt giving Charlene more and more drugs with no end in sight. The doc reassured him that it will be once off bec of the severity of the episodes. But the doc listened to Dez and called the neurologist 1st;after consulting him,they decided to give a loading dose of phenobarbitone and valproate instead. Thank God that it was Des on night shift;my fil will prob be at a loss.

The docs are concerned whether the episodes will go away and told us that there may be a need to ward her in high D (somewhat like icu). She might be warded for another 10 days.

Lord, we commit Charlene in your hands. We pray that she will be healed, but Lord, let Your will be done on earth. We will continue to hold our faith and be certain of what we hope for and be sure of what we do not see