Wednesday, 9 April 2014


Our first goal was to get out of the ICU. Then to get his weight down. Pretty soon, the barriers were falling like dominoes.

Catheter - gone.

Oxygen - stopped.

Pants - back on. There's finally few enough cords that you can single them out and detangle them once in a while.

Dominic has survived his trip to the deep end yet again. We are so incredibly proud of him.

It seems as though The Italian Drug has done its work, solving the blood clots in his liver. He'll get a few more doses of defibritide and then we'll wait and hope the problem doesn't return. His weight, which got as high as 13 kilograms, is back down below 11. His belly is a normal size again.

We're now in the process of weaning him off of many drugs, notably morphine. It's a matter of one at a time but that one in particular will be a major milestone. It means he's not in severe pain anymore.

It was a big deal when I got him to sit up last week. Pretty soon Trish had him walking again, albeit just around the room because he was still in isolation with adenovirus in his system.

Then a funny thing happened. The adenovirus didn't turn up in his last blood test. They're doing one more test but he may be able to roam the halls as soon as this afternoon.

He's no longer hooked up to medication 24 hours a day. Trish took him on a walk outside the hospital yesterday, enjoying the decidedly spring-like air. He came back and ate a hot dog - the first (arguably) real bit of food he's had in a month. Unless you count cheezies. This boy has a lot of broccoli in his future if his nutritionist has anything to say about it.

There's even talk of discharging him from the hospital in a week or so. After 42 days and counting since his bone marrow transplant, it can't come soon enough.

Even the one bit of bad news from the past week has a bright side. While in the ICU his broviac line broke. It's a line he only got a month ago, compared to the one that broke four times in the prior six months.

But they fixed the line all those other times. This time it couldn't be fixed - nothing will flow through it.

There's still another half of the line that can be used, but if something serious happened he'd need an IV just in case there was a bad reaction to a drug that was coming in through the lone broviac port.

The good news? He's probably been through the worst. There's no urgency to put in a new line because the doctors don't think it's necessary.

That light at the end of the tunnel is growing brighter.

1 comment:

  1. Little man, you are such a gift in so many ways!
    Thank you for sharing this journey with so many of us.
    We continue to pray for your health during this journey.
    BIG HUGS from our family!!