Our Fighter Boy

Arrest #2

20Aug: Izhar had a 2nd cardiac arrest. alhamdullilah it didn’t last as long as the last (15mins), alhamdulillah when it happened, a doctor who knows him was there and CPR was activated immmediately. However, even though resuscitation was carried out immediately, there is no doubt that yet again, his brain is affected. X-rays was done, heart echodiagram was done. Results was that there wasn’t any particular abnormality with regards the previous x-rays or echo.

On a brighter note, the afermath of things were not as great as the first arrest. The number of meds required to maintain his heart beat/blood pressure were not as much too. The boy was upset and looking really tired. Lips were purplish. At the end he was still able to settle down and go to sleep.

21Aug: Morning rounds by cardiac team. Team’s opinion is that he looks like how he was the morning of the 2nd cardiac arrest. Fine. Thus, now the worrying thing is WHY the 2nd arrest happened. One of the reasons may be that his heart has no more ‘reserves’. Its starting to get too stressed out from all that’s happening. What to do now is to wait and see. As there is still his fungal/bacteria infections pending for full clearance.

24Aug: Izhar seems to have settled down, but last 2 days he has been pretty cranky. His tongue keeps jutting out but when we give him the pacifier he just keeps pushing it out else just chews on it.

We do know that his cranky moments most times is when he needs to be suctioned due to secretions. The other would be due to a soiled diaper - this is another issue altogether as the skin around his anus is broken due to him pooing too much. Well, not that we’ve not had this problem before but still.

Anyways, since he wasn’t sucking on his pacifier, i decided to try and give him my finger. Alas, he immediately took to my finger and started chewing like no tomorrow. He especially bit down hard, when i massaged the molar areas. Sigh. I’m guessing the poor kid is teething.

The thing that the nurses and us parents worry about is how fast his breathing rate can get when he is upset. His normal rate at rest/sleep is high 40s-lows 50s/min. When he is agitated he can go up to high 70s, and that isn’t such a great number for a kid with weak lungs! Not only that he doesn’t sleep well unless aided by meds.

Post arrest, i do think that some of his habits have changed. And it is worrying trying to fgure out what make him comfortable without stressing him out too much.

That aside, one of the cardiologists came by to talk to us about the current plan for Izhar. Seems like the next operation that they are looking at is to repair his AV valve as the regurgitation issue not resolving. Why so because when they try to lower the pressures for the ventilator, he always starts breathing quickly showing signs that he is getting stressed out. Thus suggesting that the valve leakage is quite evident. And preventing them from extubating him.

On the other hand, i do strongly think that its coz they move too fast in term of lowering the pressures. One time they decreased his pressures by TWO points in TWO hours! And our dear Izhar has a history of “stress me out and i’ll stress you back”. When they decresed that, they had to up the pressures by THREE points to get him comfortable.

As of now, we are not too keen on having him to go through this op - even though we know that it may be for the best. But we do feel that he has been through too much and all we hope for is for him to put on a bit more body mass, as this next op is a VERY major operation.

This is the current situation per se. There are still certain things that we have yet to discuss thus we’ll have to see how things go.

In anycase, whatever plans that we have for Izhar, would all depend on what this lil fella wants to do.

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