Monday, March 22, 2010


Wendy here :   This is the update I got from Heather this afternoon -  Sick Kids had their conference and discussed Asher.   They decided "no pacemaker", they decided to stop his Carvedilol under the assumption that it could now be causing his rhythm issues, low heart rate.   And that Asher can go home once he drains less than 60mls/hr.   As you can only imagine Heather is very unhappy with this news.    Nobody can explain why Asher is grey - Liz offered the explaination of "poor lighting" and "low hemoglobin...but not low enough that we'd treat it".   And they are still not treating the's running out like milk, over 1100ccs so far since admission.   Tests are negative but given the treatment is a fat free diet, one would think it would be worth trying.   They offered some thoughts about "residual stuff draining out that looks like chylo but isn't".

Dr. R and Dr. C were called/emailed today (cardiologist and surgeon) and there's hope that they were busy today and didn't receive the messages or participate in the conference and perhaps they will feel differently about Asher's course of treatment.

I'll stop now because I don't want to rant all over Heather's blog, but know that Heather is not happy with this plan, and I am sure Heather will fight to get Asher what he needs.

To finish with a bit of good news - Asher won the toy draw and got a great Leap Frog toy that he's happily playing with.   He's such a trooper, still happily playing with so much going on.   Love that sweet boy!

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