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?