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.