Thank You, & Remembering that Little Guy

Finally gotten around to writing and mailing out Thank You cards to T, Dr C, and the hospital staff last week. Some of them have taken care of Ethan throughout his stay, following him as he was transferred from one ward to the other; while others like the Ward nurses and certain docs have looked after him for certain stretches. We didn't have the chance to thank all whom we wanted to thank properly, and some of them may not know that Ethan has passed on since. Hence the cards.

As for friends & family, we thank you for your many prayers, concern and comforting words, and by letting us know that you are there for us. We will be all right, life will go on. Ashley is a big help in taking our minds off unhappy memories, she is the delightful cause of our smiles and laughter.

No matter what, I am grateful for the privilege to have known, held, and cared for my sweet baby Jay-En aka Ethan, even if it was for such a short while. He was most amazing, had been and will be dearly loved, and will be sorely missed.

Hopefully when Ashley is much older and begins to understand the concept of life and death, we will tell her about her wonderful baby brother. For now, he is just a baby whose photo is on mummy's phone, whom she refers to as "woo-wah woo-wah" (as she refers to all babies, mimicking their cry. I personally would go for "ong-ngeh ong-ngeh", don't know where she pick up her signature "woo-wah woo-wah" from...).

For those who didn't have the chance to know that little guy, here are some photos and videos of him. Preciously few, sad to say, and most taken in the hospital. But we do have those of him laughing and smiling, taken on his better days. For that, I am grateful.




[more coming soon]

End of the Road

"Life is so fragile, precious, and temporary."


Ethan is gone. He left us on 4 Nov 2007, his 161st day of stay since he was admitted into the hospital, his 176th day since he was born. He was just into his 5th month.

It was a Sunday when it ended. Just like how it had been a Sunday when it started, when we rushed him to Terence with his 1st Steph Aureaus infection. That seems like eons ago.

It’s now only 20 days since he’s gone.

Some days back, we were buying the hippo musical toy (the one that accompanied him thru his months at the hospital had been cremated with him so that his hippo friend will be with him) to hang at E’s niche, and I realized that my Kiddy Palace membership had expired. I was told to fill up the form for a new one. I came to the query about “number of kids”. I didn’t know what to write. As far as I am concerned, my “number of kids” is 2. But from KP’s point of view, they obviously want to know the number of kids I currently have, I suppose to gauge the amount of business they’ll get from me. So what should I write there? In the end, I left that empty.

Sometimes it just feels like a dream. It just feels some surreal. One year ago, I just found out that I was expecting E. We went through the whole cycle of pregnancy and delivery and having our sweet baby with us. We were a family of 4. And one year later, it is like the whole thing didn’t happen, bcos E’s not here with us, and we are back to just us and Ashley.

If it is not meant to be, why let him suffer so much?

There are many regrets.

I regret that I will never have the chance of holding him and bringing him out gai-gai, bcos for the 1st 2 weeks we were home in Punggol and for the rest of his short life, he was always in a hospital room hooked up to IVs. Plus he had to be isolated always, to prevent him from getting infections since there must be millions of bacteria, viruses and fungus out there that his body could not fight against.

I regret that we will never see that little guy grow up and prove us right that he will turn out a tall guy, given his long limbs and fingers. That he will probably play good basketball given his height. I regret that he did not have the chance to wear that blue NBA jumper suit that the NBA folks brought down specially for him from Shanghai.

I regret that his sister will never know him. That we will never see his personality develop as he grows. Though we’ve seen enough to know that for sure he is no push-over. That no way he cannot stand up to his equally fierce and bossy sister. He is a fire baby, just like Ashley.

I regret that he had to suffer all the number of times the docs had to prick him with needles to draw blood or set IV plugs. The actual pain is one thing, but I think the more terrifying thing is the anticipation of pain, of not knowing what they are going to do to you and how much it would hurt. I remember how he would be crying as we hold him down on the bed, looking at me as if asking why are you letting them do this to me, why are you not doing anything to stop it. And all I could do was to tell him I’m sorry, and that it will be over soon.

That, I think, is my greatest regret. Him being terrified. If I, a fully-grown adult, who knows how a needle prick feels like (it’s just like an ant bite, for a second, isn’t it), can have her heart beat faster and have her hands become just a little clammy before the needle goes in, what kind of terror must it be for a wee baby of his age and size, who does not understand what is going on?

It was during his last days while he was sedated in ICU that I looked back and realized that he had not smiled nor “talked” to me for a long time. He must have been feeling quite badly that he doesn’t want to smile anymore. He only fussed to be held, I guess only when he was held, he could be less afraid.

The night before he left, he began to de-saturate gradually. Every time we moved him, to change his position or change his soiled diapers, or do suction to clear his lungs/nose/mouth, he would take longer and longer to regain his oxygen saturation. It slided slowly, from mid-80s to barely 80, then to 70s, and then 60s in the early morning.

Up to that point, I had actually been still very certain that he will pull through. He had been there before, a couple of weeks back, and he had recovered hadn’t he? But as the number on the screen went down further and further, I finally realized that it was not going to go back up again. And as his oxygen saturation drops further, his heart rate will slow down, his blood pressure will go down, and that will be the end.

I wanted to hold him again for the last time as we say our goodbyes. We had not held him for weeks, since he went into the CICU on the ventilator. The doc and nurse helped disconnect him from the ventilator, and we took turns holding him. With him off his ventilator support, the numbers went down very quickly. And then he was gone.

We didn’t want him to feel any pain or discomfort, so he was sedated right to the end. We were told we needed to dress him, so Russ went home and brought his Levi’s gift set, and we had him dressed in his 1st and last little Levi’s jeans, tee and jacket. We also put on the Pooh mitten and bootie set that we just bought the afternoon before at Bugis.

After we got E’s death certificate done at the police post next door, the undertakers took him back to prepare him for the cremation the next day. There was not going to be a wake for him. No sin, you see, him being just a baby. No need for prayers and chanting for his soul.

Of the list of crematoriums and columbariums in Singapore, we thought that the Bright Hill Monastery sounds ideal, a peaceful serene resting place with the calming chanting of prayers.

That night, we texted friends about E’s demise. It was very hard to tell people that E was dead, even via text. Maybe it is the finality of it. We drew much comfort from the messages that came back, touched to know that many cared, from the various smses to the single awkward phone call that both parties didn’t know what to say, and the simple “take care, bro” said it all.

The Cremation
The cremation the next morning was a really brief affair. Too brief, I feel. It was a rainy Monday morning, and the morning peak hour traffic with rain and accidents on PIE (yes, it was a typical working Monday; the world still goes on, with or without us) had our undertakers arriving very late for our booked “time slot”. They had Ethan in this beautiful white casket, baby-sized. It was heart-wrenching to see a baby-sized casket.

We placed his hippo stuffed toy with him inside the casket, along with the mittens/booties that his Por Por bought just the day before he died and never had the chance to wear, the cards that Chester and Chantel drew the night before for him, the sketch that Russ did of our little family plus the letter we wrote him, and white roses.


Then we barely had time to kiss him goodbye, and they closed the casket, the monks did a short chant, and he was cremated.


His Final Resting Place
The Bright Hill Columbarium consists of 3 areas: the downstairs non-aircon area is really old, dark and cramped with floor to ceiling shelves of urns placed in a 4-step manner much like rows of cinema seats; the upstairs aircon area also feels quite claustrophobic to me, with most of the niches taken up and belonging to old folks judging by the photos; and the least occupied, aircon, high-ceiling 60-year “leasehold” building.

You see, this is how it works. The cremation fee covers allocating a random storage space in the Downstairs area. If you want a better spot, you can purchase a better-situated niche in any of the 3 areas. Prices for a niche range from S$2K to S$12K. So naturally, the eye-level niches in more spacious surroundings with statues of gods/goddesses in view are the pricest of the lot.

2 things that I realised: that (1) occupancy rate is high, the choicest niches are no longer available unless you want to fork out some S$10K; and (2) there are many rich people in Singapore. Remaining niche locations in the "leasehold" building are the best of the lot, but who would want to have to worry about extension or relocating 60 years down the road?

We decided that we didn't like the enclosed format of the Bright Hill Columbarium, so we decided to check out Mandai Columbarium. We want a nice, quiet, peaceful, serene and open-air resting place for Ethan, where we can visit him often and even hang out for a while. Turned out that modern, government-run Mandai is that place we were searching for.

We chose a family niche (meaning that it can hold 3 urns as oppose to the "standard" niche that holds only 1), intentionally picking a niche that is: (1) a "corner unit" in HDB-speak; (2) 2nd level from floor up, so that it is just the right level for us to see him if we sit on the ground, (3) facing the green slope so that Ethan gets a nice view. The bonus is that there is a bench next to his niche, and also, a power socket. Now all we need is wireless connection and we could park ourselves there whole day. I wonder when Wireless@SG will come to Mandai?

I also insisted on personally going down to the Woodlands factory to finalise on the 'artwork' of his tombstone (must be an occupational hazard of mine), when the lady didn't understand what I meant by wanting specific fonts for the engravings. Didn't help that I didn't know what's the mandarin translation for 'font'. The resultant tombstone isn't particularly creative nor a breakthrough of any sorts, but it is what I prefer rather than those standard-package design that all the other niches have.



His picture you see on his tombstone, that's another story. As we have pitifully few photos of Ethan, the best one was the one I've taken of him with the Shrek ears when he was only some 2.5 months old. We love the mischevous gleam in his eye, like he is sharing some secret with you. He looked so alert in that photo. But we didn't like to remember him with all those tubes. So we found this kind-heartened young fellow in a makeover shop who DIed away the Shrek ears and the NG tube for us.

"Before":

"After":


His niche is easily identifiable now, as currently, there is this bobbing helium balloon that his Sharon auntie bought for him.

DAY 156

FiO2 setting: 80
Pressure setting: 31-32
Dopey's O2 saturation: 87-89
Milk intake: 24ml/hr

It's terribly frustrating and disheartening that every time we managed to decrease the settings a little, we have to go back up again when he can't maintain his saturation. With much yo-yoing these few days, we have not managed to make any progress to wean him off the ventilator.

Which means that he is not improving. Which means the longer he is on the ventilator, the more likelihood that the high pressure & O2 will cause permanent damage to his lungs. And the longer he is on the anaesthesia/muscle relaxant, the more the inmobility will result in his muscles wasting away.

And yest morning, had a fright again when his ventilator stopped. It's the 2nd time around. At least this time I know, with past experience behind me, that it is faster to run out of the room yelling for the docs than just pressing the call bell and waiting for someone to come.

And today, he seemed to have suddenly visibily lost weight. He looks quite gaunt. Perhaps it is bcos he has passed out all those accumulated fluid in him, and that removed that artificial plumpness that we've been seeing these weeks?

Oh, and Harry Potter & the Deathly Hallows: Chapter 7

DAY 151

FiO2 setting: 70%
Pressure setting: 30.5
Dopey's O2 saturation: fairly constant at 92-93
Harry Potter & the Deathly Hallows: Chapter 3

Small victories... ...

DAY 150

Am pleased to share that Ethan is able to maintain his O2 sat at 91 with 80% FiO2 & pressure 33. And he is still wriggling his little fingers & toes now & then.

After yesterday, my conviction that Ethan is going to be okay is even stronger. Things may get worst before they get better, but at least I can take comfort that my strong stubborn fire baby will overcome all these challenges.

I just read him the 1st 2 chapters of Harry Potter and the Deathly Hallows. Shouldn't be inappropriate reading for a kid, right? Afterall it is written for children, no? Though it may not be quite ideal to start him off with Book 7, hmm...

Well, it can't be any less fitting than Ashley's first movie. You'll never imagine which one, really. No, not a Walt Disney film or even a Dreamworks animation. She caught it together with my MIL.
~Ashley Cheng, at the tender age of 16 mths, had her first big screen experience titled "881". ~

Not fair, I haven't even seen it myself.

[For out-of-towners, "881" is a Singaporean movie set against the unique rich culture of getai, getai being the gaudy, loud, flashy (mainly Hokkien?) song-&-dance show set up during the Lunar 7th month aka Hungry Ghost Festival to entertain the "good brothers" of the netherworld. I understand that this local production by Royston Tan brought many heartland aunties and uncles who have not stepped into a cinema hall for ages to return.]

Dopey just moved his fingers, left hand and mouth :)

Strong boy, even your anaesthesia cocktail can't keep you down, can it?

DAY 148

It's not good. He is regressing. Back at 100% on the FiO2 and pressure at 33. And those high settings only yield him a O2 saturation of 90-91.

Doc L says Ethan hasn't gotten past the peak of the para-influenza virus, so the infection is still damaging his lungs. And he expects him to get worse in the next few days. And they've done all they can do for him at this point. But that doc is always so negative. We prefer to speak with Doc C tomorrow.

What we are battling now is ARDS - acute respiratory distress syndrome. If you google it, it's basically breathing failure caused by underlying illness. In his case, it's the para-influenza virus that damaged his lungs, causing them to be unable to properly bring in oxygen into his body and clear carbon dioxide from his body.

We need to get rid of the nasty bug. But if his immune system doesn't work, how are we to do that?

DAY 145

16-18 Oct were the darkest days... His lungs are so badly infected by the para-influenza virus that Docs told us to be prepared for the worst. And the family may like to visit. To think that this is just a nasty flu bug for most people, yet to him it's so deadly.

They were already giving him the max support via the oscillatory hi-freq ventilator that gives him constant pressure to "open" up his fluid-logged lungs. Any more pressure, his little lungs can't take it; and O2 is at the max 100%. Yet his O2 saturation just keeps sliding down, from 90s to 80s to 74 at the lowest point.

He was given Ribavirin, the drug that might or might not help, but since he is so sick it's worth trying. He's also on heavy sedation and morphine, and they paralyse him so that he doesn't move about and dislodge his life-support equipment. A chest tube was also put in to drain the fluid.

And then it's all up to him. His choice. I alternate between telling him it's ok whichever way he chooses, b'cos he's been fighting for so long and he must be really tired, and pleading for him to stay with us.

I would like to think that he can't bear to leave all the people who loves him too, bcos yesterday his O2 saturation started to inch up point by precious point, giving us a glimmer of hope finally. And I can at last update this blog to set the minds of all our well-wishers at some ease at least. Sorry folks, I just couldn't bring myself to write earlier.

Understandably, the Docs are cautious in their opinions as he hasn't turned the corner yet. But every time they reduce the high settings of the machine, be it oxygen or pressure, and he can still maintain his O2 at a decent 90-94, the hope increases. He is now on 60% oxygen, 30-pt pressure, and O2 at 94 with okay heart rate & bp (blood pressure). When he stablizes further, the plan will be to drop the high pressure so that we don't bash his lungs too much.

Sweet, we are so so proud of you. You are awesome. And we love you so so much.

He has many more hurdles to clear ahead of him. The immediate one after we can confirm that he has curb the infection's progress is if there's any permanent damage to his lungs. And we've been warned that recovery will be slow.

And during our family conference with the BMT team last Thu we were informed that for his particular type of immunodeficiency, success rate of the transplant is low (30% vs the 70-90% for other immunodeficiency cases). We also finally heard from France that his IL12 component is very low, which explains why his body is not "triggered" to defend itself during attacks. And this being such a rare condition worldwide, documented cases seem to show that this condition does not respond that well to BMT, the donated cells don't engraft very well within the host. So the BMT is a very high risk procedure for him. Whether he will recover after BMT is a question mark.

For now, we'll take it hurdle by hurdle.

Thank you all who have expressed your concern, well-wishes, encouragements and kept us in your prayers. (And Chak/EK, I've been visitng Zach's blog too. Glad to hear that his counts are back up).

Here's a photo taken of Jay-En on 6 Oct before he got so sick:










My mum-in-law told us that for a couple of nights this week, Ashley has been waking up in the middle of the night crying uncharacteristically, at times doing the bao bao (cradling) action. At a year-&-a-half years old, we don't know how much she understands the concept of having a di-di (younger brother), esp one she hasn't seen much of except through glass windows, but we've been teaching her to bao bao di-di, and that action is what she'll do when 'di-di' is mentioned. Maybe it is some unexplainable invisible bond that she feels?

DAY 138

It's Ethan's fifth month birthday today.

He's back in CICU yesterday evening. The viral infection has progressed, and his breathing is worse. They've put him on the ventilator, and yet his O2 sat is only at best 92-3.

They put a scope down his lungs yesterday evening to have a look at what's ailing him plus collecting some tissue samples, suspecting it's the same para-influenza virus, but just to make sure it's not something else as well. Some results will be in later today, others a few days later.

Dr L says that he's expected to get worse in the next few days when the infection peaks. His condition is serious as his compromised immune system may not be able to fight and eradicate the virus. There's no known/well-proven medication that can help him. If he does get worse, they may just suggest we try experimental drug. Recovery process will be prolonged.

At least thankfully he is sedated now, so hopefully he is not in much discomfort or distress. He's a fighter though. Even when he's doped yesterday he was still kicking and struggling to fight off the docs & nurses who were "disturbing" him. Strong boy, keep fighting the nasty bugs and whack them ya.

DAY 136

Just when we thought that everything's going well, ethan contracted another infection, this time viral - para-influenza, type 3, the nasty type.

It was discovered last Saturday after the doc ordered a nose swab, when ethan started breathing harder. Days 5-6 is the peak of the infection, today is the 6th day. He is back in Hi-D, on the hated C-pap, with a nasty sounding cough.

The good news is his yesterday's chest xray shows improvement in the infection, and his lungs sound clear today.

The bad news is that he had 2 frights yest afternoon and again last night, the 2nd compounded onto the 1st, making him extremely fretful and jumpy that he dare not sleep altho he looks so tired, and when he does doze off from sheer exhaustion, he jumps up from his sleep every few minutes. He watches any stranger near him wearily till they go away, and whimpers if he is touched or at any attempts to put him down on his bed. He also can't maintain his O2 saturation, breathing very hard, shallow & fast.

Apparently what happened was the tape holding the c-pap in place gave way, and the device sprung and hit him on the face and woke him so abruptly that he had a bad scare. Took the whole afternoon to calm him down, holding him closely. Then at night, the tape came loose again, so when the nurse changed it he somehow got another bad scare that set his heart rate racing for quite a while.

DAY 125

48-hour blood culture results: negative
(Phew. No infection. Now what caused that spike of high fever on Fri?)

DAY 123

We've got good news today -- the Taiwan donor is a match... Dopey has a donor, yay!

Let me backtrack a bit, since this blog hasn't been updated for quite a while. I went back to work on Sep 3, so between work, visiting Dopey at the hospital, visiting Ashley at MIL's and sleep, there isn't much time for updates. Prepare for a long entry.

We first did a prelim search with the cord blood and marrow database in Singapore. The requirement is a 6-pt match for a bone marrow, or at least a 5-pt match for cord blood. What's in the database is only low-res test results, meaning that we have to activate and call any potential matched donor back for high-res testing to confirm if it were a perfect match (i.e. 6-pt match). We found 1 potential match for cord blood (5-pt) and 6 potential marrow donor matches. Since cord blood is only a 5-pt match, we decided to go with marrow donor testing, hoping to find a full match which is more ideal.

Of the 6 potentials, 3 are males and 3 females. As far as low res results available from the database show, all have equal chances of being a full match. It's better to go with same gender, and the younger the better. So we started with the 1st potential who is a male aged 36 or thereabouts I think. After some days, we were told that he either couldn't or didn't wish to donate his marrow.

So we moved on to the 2nd donor, who is about a year older. 3 days later we were informed that it was 1-pt mismatch, so that's a wasted attempt. They also found many potential matches from Taiwan, and the database there shows slightly more extensive test results, meaning that looking at the list it's more likely for the TW donors to be a match than the 3rd Singaporean male because there are some unknowns in the latter's case. And the youngest on the TW list is only 24, which is better (less wear & tear?). The only catch is that with a TW donor, the cost goes up by some SGD17K. But it's a no-brainer, of course we chose to straight away test the TW donor. And we strike jackpot with this one.

Now with a 6-pt match, they will conducted a further test for 2 more pts. If the 2-pts match, all the better for Ethan. But even if they don't, we can still go ahead with the transplant. And now as the next step toward transplant, they need to draw quite a substantial amount of blood (20-30ml) from him to test the various infection markers like Hep B, HIV etc. So naturally we are worried about him losing that large amount of blood. We'll talk to the docs over the weekend or on Mon before giving them the go ahead. And we will make sure the doc drawing the blood is someone familiar with him, since you know how difficult it is to find a usable vein with a good flow with him. I don't want him to be pricked more than necessary.

Btw, his long line is now on his scalp, above his right ear. It was a scary thought, when the doc says that if she can't find a suitable vein on his arms she will have to go to his scalp. But I guess now we are used to it. Looking on the bright side, with the long line on his head, his limbs are now free and Dopey can now sit fully in the tub (or rather, basin) during bath time. And he does like that.

Oh, and we just shifted out of Hi-D to Ward 75 now, in a similar iso room, but with a large overhead TV (ok, not that big, but when compared to that 14" one we brought in with lousy reception and no cable, this is a big improvement). And there's even Barney and Sesame Street. You shld see Ethan stare at the TV when it's on.

He has been doing so well, getting better and better, that the docs were planning to stop his IV meds, and also TPN once he can handle full milk feeds. Then he had a fever spike yesterday at dawn - 39.5 degreeC. Damn. They took blood yesterday for culture, and stool and urine samples for testing. 24-hour blood culture is negative. Am keeping fingers and toes crossed that he hasn't contracted yet another infection.

Weight (as of yesterday): 4.36kg
Milk Feed: 33ml per hour, abt 18 hrs of continuous feed daily. The target is 36ml/hr before we can take off the TPN

Speaking of weight, there was an upsetting episode with the NJ tube that made him lose some 16% of his weight within 3 days during the 1st week of Sep. As Ethan was still throwing up once or twice then, docs suggested to change his NG tube to an NJ tube. The diff is that the NJ tube goes beyond his stomach into his intestines, with the good intention that he will be less likely to vomit up his milk and medicines.

Unfortunately, 2 things: the process of inserting the NJ tube had him cried for at least an hour bcos they had to basically 'handle' him by turning him etc to get the tube to slip into the twisted intestines, which he didn't like; and somehow he doesn't agree with the tube at all, and continued throwing up, this time green bile. We told the docs the tube doesn't agree with him but they felt it was bcos of the increased milk feed that they are giving him that caused the vomitting, since past experiences with the NJ tube is usually favourable. We agreed to try cutting back the feeds and monitor the situation, but 3 days later, I returned from work, picked him up and realised how light he has become, and i could feel both his hip bones within my single palm. And he became rather weak and listless, very unlike his usual alert self when he is well. And he hasn't smiled for quite a while. That's when i really panicked. And finally we insisted that they pull out the NJ tube and go back to the NG tube. And you know what, he was fine after that.

We did another bone marrow aspiration last week and had fantastic news - it came back negative from the TB-group of germs. Finally. After more than 6 weeks of the anti-TB meds, we finally see progress. And we re-did a CT scan of his brain to check on the 2 lesions: the 1 near his brain stem can't be seen anymore, and the other has shrunk. The radiologist thinks that that is not an infection abscess but seems like some calcium-like formation. So it's good.

Side entry #1:
Russ and me brought Ashley out last Sun, our 1st outing with her after 4 months. She had a whale of a time. We were utterly exhausted. Have you tried chasing after a 17-mth active toddler who has just discovered walking/running and therefore isn't 100% stable on her feet and doesn't run in a straight line? I think the killer is that you are looking DOWN, while trying to follow the undulating route, with sudden brakes and sprints, that is the dizzying part. But i love it. We are going to do that again this Sunday, i hope.

Side entry #2:
I can't resist it, I must document this story Russ told me yesterday:
My MIL was in her kitchen doing her kitcheny stuff. She had a plate of 5 Shou Tao (longevity buns) on the table. Shortly after, she saw that there were 4. "Can't be, I had 5," she thought. And decided to go look for Ashley. She found her squeezed into the small corner between the sofa and the shoe cabinet in the living room. Ash looked back up at her. At first glance, Ash didn't seem to be eating anything. But then on closer inspection my MIL saw telltale black stains around her mouth. Further investigations found that Ash had her arms behind her, holding onto a Shou Tao. Now, how can a wee girl of not yet a year-and-a-half possibly tip-toed and stretched her way to reach the plate on the dining table, knows that she needs to find a secret hiding place to enjoy her find, and reckons that she better hide the evidence when her por-por comes looking for her? There's more... she had actually nibbled and dug her way into the sweet filling from UNDERNEATH the bun, so if you put it back in the plate, the bun looks untouched and whole.

Dad, mum, da gu, sis - thanks for watching Ethan while we were at work, I couldn't have continued working without you there taking care of him, and we wouldn't be able to spend so much precious time with Ashley if not for you. I know how terribly tiring it can be, especially when he is unwell and fussy. I really appreciate how you have temporarily put your life on hold for us, and i hope things will go back to a more normal state in a few months' time. It will take longer than that for Ethan to fully recover, but at least we hope he can go home 3-4 months after his transplant. The transplant WILL work, it must work.

And thank you, friends, relatives & colleagues for your well-wishes, prayers and kind words.

Sleep well Sweet.

DAY 84

They put in a long line today, under his left armpit.

And here's the good bit: I just saw his heart rate come down to the 109-120s range when he's asleep, and 130-140s when awake. It hasn't been this low for quite a long while. At the highest, we've seen his heart rate at 180s while awake and not crying, and really fast breathing. I feel breathless when I tried to follow his breathing pattern.
Hope this is a sign that he's doing better dealing with his infections and the anti-TB med is working after 3 weeks.

Weight: 4.27kg (yay! keep growing dopey!)

Was sorting through some photos and found some favourites.
Ashley at 11 months old:

My big Shrek...


...and my little Shrek:


Shrek ears courtesy of McDonald's KK Hospital

DAY 82

Ethan's doing well these few days.
He still has temp spikes daily for a short period, and his liver & spleen are still enlarged. But he seems quite comfortable and is pretty smiley.

Look, his roman sandals:




They took out his long line on Tue. It's been over a month since it was inserted, and was due to be removed lest it causes an infection. And they didn't want to put in a new line when he's still having fever. So we have to use plugs for his IV meds and nutrition. These plugs only last a day before the area starts to swell. Then the docs have to off the plug in question and set a new one. They finding it harder to find usable veins on the limbs.
I'm keeping my fingers crossed that there's no fever tomorrow so that they can put in a long line on Mon. And end the daily prickings.
I know Doc T will be thankful, for one. She must be stressed out whenever we insist for her to set plugs/draw blood, cos she's the only few we trust. No more incompetent house officers (or docs of any level for that matter) since the last blotched job. I'm still kicking myself for letting that HO attempt to set the plug. She's not going anywhere near my baby again with a needle.

Weight (Fri 17 Aug): 4.1kg

DAY 75

The last scan results were not as good as I hoped:
Brain - 1st lesion is slightly smaller. They found another lesion. Neurosurgeon's opinion is that both are small and probably caused by infection, so to continue the antibiotics treatment, no need for removal/biopsy.
Lung nodules - not much change from before. I guess consolation is that at least they are not spreading.
Liver/spleen - larger again, but no abcess/growth so that's good. However cannot determine exact cause of enlargement but can say that it is infection related.

The bone marrow extract and skin lesion smear show the presence of the TB group of germs, so the BCG vaccine has caused widespread infection. Doc has ordered a change in his meds to better control this so Ethan is now off IV Ampho and Fortum, and has started on a new drug, IV Cipro.

We transferred to Hi-D again on Tue afternoon. Reg noticed that Dopey was breathing harder and couldn't maintain his 02 saturation in the high 90s, so ordered the transfer so that they could put him on C-pap. He hated it. Was thrashing about and crying. His cry has become hoarse; I really preferred that loud strong cry that at least tells me he is well enough to protest mightily. The unfriendly design of the C-pap just pisses me off big-time. It obviously isn't designed for infants who have the natural sense to retaliate when foreign objects are stuck up their nostrils. The situation was aggravated when we had to insert the NG tube via his mouth now that his nostrils were occupied - Dopey just pushes the NG tube out within like 20 mins which meant that we had to re-insert the tube every 2 hours for feeding. Needless to say, he hates to have the NG tube pushed down his throat too. We struggled for hours, it was terrible. To add to that, the room we were in doesn't have that built-in niche where mum usually rests, and Hi-D doesn't allow the use of deck chairs. I was worried that Dopey will be super restless and difficult to handle that night plus daddy & mummy won't have sleeping spaces.

Luckily Dopey managed to sleep somewhat ok that night, except when he was awakened by the tube being forced down his throat during his feeds. Next morning, he had gotten quite used to the C-pap and at least wasn't trying to get it off his head but I still wasn't happy with the tight headband that left red marks on his soft head and the fact that the NG tube needed to be inserted every 2 hours. The discomfort is one thing, but the more serious consequence of that is that with such frequent insertions there is a higher chance of his nasal passage being injured, and it can't be hygienic to keep putting in that same tube. I'm glad that after hearing my complaints, the docs worked with the nurses and came back with a more comfortable and secure headband, and managed to have both the NG tube and nose prong in the nostril. I was so comforted when Dopey could smile at me again despite that contraption on his face, at least I am assured that he is not in too much of a discomfort.

6524 became available on National Day, so we shifted over that afternoon. Hurray, we got our niche and storage spaces back.

Dopey really lived up to his nick today. He slept from morning till late afternoon, through 2 chest x-rays, 1 long ultrasound seesion (liver/spleen), his eye exam when bright beams were shone into his eyes, his feeds, and most amazingly, the blood drawing and plug setting when Doc T had to prick him twice. Docs ordered the x-ray, ultrasound and blood tests/cultures bcos of his high temp spike (39.3) last night.

His eye condition seems to have worsen. There's a visible ring around his 2 scars and cloudiness. Eye docs are now covering him for bacterial and viral infections, and will review again next Mon.

Doc J told me today that they will go ahead with the bone marrow prelim search although the transplant is not 100% fixed to save time. We'll do the CDG genetic test and see how that goes although Dr T didn't think that is very likely. We'll also see if Dr L can get any new advice after he presents Ethan's case to his colleagues in Melbourne. The plan is that if both are negative, the various teams will decide if they all agree that this is a case of immunodeficiency, although they cannot find the exact name to this deficiency. If they do agree so, they will sit down and speak to us about the transplant.

Weight on Thu 8 Aug: 4.3kg with C-pap tubing and wrap (I do see some meat on his thighs now!)

DAY 68

Dopey just went gai-gai today, to CT Scan his head, chest and abdominal. So he's in quite a good mood. Was playing and smiling with me a while ago, and has just fallen asleep.

He has really grown up during his stay in the hospital. From a newborn who cries at anything to a more 'knowing' baby -- he now communicates with his big big eyes, he pouts, he smiles, he grins, he says hello with a slight tilt of his head and makes the "tsneh" sound, he does the "i'm so poor thing why aren't you picking me up" sob, he knows when you are going to cause him pain or discomfort and he protests violently first by crying real loud, he scolds docs and nurses who prick him with the needle, sometimes he gets so angry that even after he has quieten down when you hold and rock him he still must get the last word in to make sure you know he's not happy about the situation -- you know when you watch movies, one of the production houses uses that lion that growls while circling its head? Dopey does that, but his version is a grouchy cub version -- tickling us to death rather than impose any fear.

Can't wait to see the scan results, hopefully there's some good news later when the doc comes around for the pm round. They also took lots of blood on Wed for tests. Heard yest that his infection markers are down, which is good. But need more time for the test results to come back. They topped up his blood too as his platelets are low. Yest, docs did the skin biopsy of 2 of the chest nodules and also extracted his bone marrow (from the left low leg) for testing. His condition has been quite the same these few days: temp will spike up about once daily; he'll vomit once or twice a day; they removed and then put back the TPN after his weight fell.

I informed docs about the 2 oval spots i spied in the centre of the left pupil, and they diagnosed them as scars. Suspect they are from infection rather than abrasion bcos of the even 'nice' shapes, but docs can't tell us the cause. One of the ovals is still 'open', so he's on antibiotic eyedrops to prevent it from worsening. He will also need long term drops to dilute his left pupil more so that his left vision is not blocked by the scars and cause lazy eye. He will also need regular eye checks till he's 8 or thereabouts. And he's likely to have astimagnism bcos his cornea is not smooth and even now.

Weight: 3.7kg (yay! that's an increase of 0.3kg from Mon)

DAY 56

D'S DAY: GOOD

Dopey's in a good mood today. Very good boy, just lay there by himself and doze off, without fussing to be picked up. And he gave me a smile! :) Made my day.

Heart rate high when we came in this morning, and fluctuating quite a bit, jumping from high 170s to 183 even -- when he is simply awake and lying there without seeming agitated. Got us quite concerned. Doc took some blood (from plug, so no pricking) for testing to make sure all is fine. K level this morning normal.

Dopey had a bad Fri night, took a while to doze off and keep getting interrupted by staff for blood taking (his K level's low so need to monitor closely), feeding, temp checks, BP checks etc). So he had not much sleep. Poor thing, looked so tired so I held him in my arms nearly whole of Sat so that he can sleep in peace and really rest. If I were to leave him on the bed, he won't sleep for long and keeps getting startled. Very jumpy. Thankfully, he seemed to have rested enough as by evening, he was awake to enjoy his favourite show: that of the nurses changing his TPN tubes and taps. It's quite an elaborate procedure since it has to be done under sterile conditions and involves 2 or 3 nurses. He seems to be really interested and always lays there quietly (thay says a lot for someone who keeps wanting to be picked up) watching them, following their movements with his eyes wide open and neck stretched long.

Just heard from doc PT, Ashley's HLA doesn't match... Am having mixed feelings... on 1 hand, that means Ethan will need to get an unrelated donor which also means risk of reject; on the other hand, we won't have to worry that Ash needs to go thru donating bone marrow (she's not at the min preferred weight of 10-12kg yet). And since Ash's doesn't match, daddy mummy's won't either...

DAY 54

D's DAY: GOOD (considerating his bath...)

Dopey had his 1st bath in ages this morning, thanks to favourite nurse G. All these days, all he has had were sponges, but finally today, he has the chance to wash his hair (well, what little hair he has anyway) :D He seemed to enjoyed his bath, which came as quite a surprise to me. Thought he would cry like he always does during his sponges. Good, we shall do this again tomorrow, shall we, darling dopey?

Another new experience is the visit by Speech Language therapist just now. No, Ethan is not learning to speak yet, despite what that title says. This is to assess and help with his bottling. Since he started retching about 2 weeks back, he has been refusing to feed orally, so we're trying to make him 'remember' that 'milk taste and sucking = full tummy', in case he gets too used to the NG tube feeding and forgets the natural way. Anyway, he's ultra sensitive to touch and complains when the therapist touches his face.

Weight: 3.37kg (slighlt up from last weigh, good!)
Puke: 0830am (it's that nasty-tasting multi-vits); 1230pm feed, quite a lot
Poo: 4 times since morning
Blood count: a bit low but doesn't need a transfusion for now
K level: 2.5 on yest's check (dropped again, sigh. It's all that apho's fault)
No fever today

Oh, and i finally bought a Kopitiam privilege card today. After accumulating a spend of $20, I shall be entitled to upgrade to a blue card that gives me 10% discount...

DAY 53

D's DAY: OK

Puked up his iron/multi-vs in the morning, so doc's agreed to take off the iron since he's now on TPN (installed late last night). Good thing abt the TPN is that he will get his nutrients and gain weight. Bad thing is the possible side effect on his liver. So they need to monitor his liver functions. He also puke up a little of his TB orange oral med. MO took some blood just now to test for: liver functions, blood cells (esp T-cells & platelets), & K-level. He's now on 30ml every 2-hr (still tubing, he doesn't want to suck), plus TPN. Otherwise, Dopey's bright and alert when awake, and knows how to use manipulative crying to get mummy to pick him up.

We know KK quite well by now, unfortunately. I don't wish to know KK this well, really. I don't wish to know 10 nurses by name, and more than double that by sight. I don't wish to have the need for daily visits by doctors from cardiac team, hema/oncology team, infectious diseases team, immunology and ward teams. I don't wish to be using terms like staphylococcus aureus, klebsiella bactereum, SCID, IVIG, cloxacillin, vancomycin, amphoteracin, fortum, gentamycin, TPN, O2 saturation level, t-cells, b-cells, tegaderm and coban with ease. Most of all, I don't wish to be familiar with the procedures of setting an IV plug or drawing blood, but having to hold Dopey's hand through those, hoping that the touch will reduce his fear a little, every few days or sometimes even a couple of times a day, how can I help not being somewhat knowledgeable about them? To date, it's Dopey's 53th day in this hospital. We've been around, literally, from CICU to High-D (Dependency) to General Ward 66, back to High-D, & now 62.

It started with Ethan getting a raging infection. By the time we got him to his PD, he was frightfully pale in the face with a greenish tint, his breathing was laboured, his belly was distended and swollen, and purple spots had appeared on his torso. The cocktail of antibiotics his PD pumped into him immediately got his infection under control, but the infection had also caused a collection of pus around his heart. This growing abcess was restricting his heart from pumping properly, thus it was critical that he undergoes an emergency cardiac surgery immediately. He had to be transferred to another hospital to do that, and the transfer is risky considering his extremely unstable condition. We were fortunate that the op happened quickly and well. We learnt later that his infection was caused by a bacteria called Staphylococcus Aureus. Other than the abcess, it was present in his blood and also has caused some cavities in his lungs. What followed was weeks of antibiotics and anti-fungi treatments (he also had a fungus infection), with periodic checks on his progress. Added to his sufferings was nappy rash that was so severe that his skin broke and there was even blood on his pampers. The pain must have been excruciating when we had to wash his bum with antiseptic wash, and even barrier cream & spray (Secura, Cavilon Cream, Cavilon Spray, Desitin - we've tried them all) must have stung. And we do this every so often since with his diarrhoea, he pooed so frequently. Different nurses offered different advice, what I found works for me ultimately for cleaning is using cotton buds and saline. And the quickest way to heal the bum is to air it. It's not as simple as it sounds, when Ethan was in pain and was only consoled when he was being carried, and is such a light sleeper and needed to be wrapped up snuckly, or sometimes he was finally asleep but it was late at night and exposing him could mean him catching a cold. Surprisingly, the one time when i succeeded in airing his butt for a good few hours was the one night we spent in the noisy 6-bedded General Ward with the fan loudly rotating overhead. And he had a better night's sleep there than in the aircon isolation room in Hi-D.

Just when we finally have a date of discharge and were looking forward to going home, a 2nd infection struck. This time it is a bacteria called Klebsiella Bacterium, another common bacteria. More antibiotics were added. The ulcer-like sore on his left buttock was also noted to have worsen. Turned out that this is his BCG vaccination site (given at birth). With all these infections occurring within such a short timespan, the docs have to chase up on whay's wrong with his immune system. Apparently what he has is very rare, not a clear-cut immunodeficiency case. And turned out that this specialised immunology field is very small, that there's a grand total of 3 specialists in Singapore. All are already consulted with on Ethan's case. Now the docs have narrowed it down to a suspected Zap-70 deficiency, under the Severe Combined ImmunoDeficiency (SCID) group. Tests have to be done in specialised lab in US/Toronto to confirm that, and we are now awaiting for that result. If confirmed a SCID, the only cure is a bone marrow transplant, and that is another long ordeal. In the interestof saving time, blood from Ash, daddy & mummy have been sent for matching on Monday. The blood collection from Ashley is another story altogether, which I may share another time...

Meanwhile, we continue to stay in 6227, Dopey's iso room...

DAY 52

D'S DAY: OK

Dopey's having a rather quiet peaceful day today. Ran a low-grade fever earlier in the day which came down early afternoon, pooed twice (v greenish loose stools), feeding 20 ml every 2-hrly via tube and keeping them down except for the 4pm feed which includes the 2 new oral meds for TB. Yesterday's CT scan shows that his brain nodule has decreased slightly, lung nodules as well, no problems with the right neck, liver and spleen which we had concerns about. Positive news, but slightly disappointing as I was hoping to hear that the nodules have cleared up after two weeks of antibiotics. ID and Hema/Onco teams thus ordered some changes in meds Now he's on: IV Fortum, IV Amphoteracin, IV Amikacin, 2 TB orals, plus his daily iron and multi-vits. His left butt sore seems to have worsen, looks really painful - guess that's why docs ordered the TB meds. His 24-hr blood culture has shown negative for infections, hope it stays the same. Potassium (K) level: 2.8, will have another dose of KCI. Didn't have to hurt him except for a heel prick today to test for K level.