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the update you've all been waiting for

Posted Oct 19 2010 1:26pm
ok, so we went to cardio in toronto today. here's the low-down
  1. the echo showed nothing wrong, other than some minor backflow through the arch (some blood flowing the wrong way through his aortic arch, so... back toward the heart instead of out to the body). but it's only minor so she's not concerned. basically, the symptoms do not appear to be caused by his heart.
  2. asher now weighs in at a whopping 14.6 kg (32 lbs). this is roughly a 16% gain over his weight in may. to give you some perspective, this would be proportionally the same as if i had gained approximately 30lbs in the same period (which, thankfully, i didn't). when i mentioned the weight gain to dr russell, she was very concerned. she recognizes that he needed to gain it, and he is now nicely proportioned between height and weight, but she said that we can now back off on the uber high fat diet, and just go with "a little higher fat than normal." because this kind of weight gain over a longer period of time will not be good for his heart.
  3. asher's bloodwork showed that his liver is doing well, and his protein is good, so that's a good thing. but... the results showed that he's on the dry side (which he often is). so she stopped the HCT (the diurretic) for now, adding that if he begins to get really puffy, that he probably only needs it every other day instead of daily. we will discuss that with london cardio on thursday. i already know that nephro (who put him on it originally) is comfortable with stopping it, but he left it up to cardio. so it looks like everyone is on board with that.
  4. i told her about asher's newest diagnosis (epilepsy) and all the seizures he has (average of 2-3 absence seizures a day). she was very concerned about this. she asked a lot of questions about why we had consulted neuro, and when i told her about the seizures with fever, she came closer to freaking out than i have ever seen her (and heart moms who know her know she doesn't freak out). she told me that, if neuro wants to medicate asher for the seizures, that they should feel free to do that. (her way of saying, "yeah, they really need to get on top of that.")
  5. since any and all cardiac issues have been ruled out, she said that asher's paediatrician should now "feel free" to investigate "general paediatric issues." so, basically, we have ruled out the heart, but other than that, she doesn't know. but it's not heart.
basically, we covered a lot of ground in just a few minutes. and given that asher and i hit the road just after 4am, it was a very long day today. i am exhausted now. asher got to nap all the way home (no, i'm not bitter or anything). but thank-you to my wonderful friend (and asher's new girlfriend) diane for having lunch with us. definitely a good end to the appointment. 
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