Saturday, October 25, 2008

The Echo is behind us....Holter monitor this Friday!

So the echo went well. I was still a little frusterated as the doctor kept talking about how Dominic was sick and snotty. He was not! Dominic has a noisy airway and they seem to conclude that this means he is sick and they wouldn't listen to me saying he is fine....this is normal. When the echo was done with I came back into the room and the doctor tells me as if I didn't know "He was soon as he was sedated the noisy breathing stopped" I really felt like saying "told you so". Anyway they said that his function looks great, no leaky valves or anything. She did say though that they probably wouldn't close the fenestration (the hole they left in the conduit) for another year or two. I was under the impression that it would only be at 6-12 months post op. I don't know why she was saying different, it is possible that she didn't really know. I found that they really didn't know much about single ventricle kids up on the sedation ward. They were very interested in Dominic though!

It looks like Dominic's brain stem test will be at the London Children's hospital in February. This is the test where they are checking to see if what Dominic is hearing is getting to his brain. I have now been introduced to another medical issue that causes speech problems and that is called Apraxia. It is where the person knows what they want to say but either the one part of the brain is damaged or not developed correctly and they have a hard time saying what they want to. The description sound very similar to Dominic and the speech therapists that work with him have said that it is a possiblity when I mentioned it but they can not diagnose it. I will be asking the pediatrician. This week we go to London for a consult with the ENT who will be doing the brian stem test, I may ask him about it aswell.

My family doctor did say that he would fill out the form for the disability tax benefit but he was not that promising and he said for walking and speech which would mean that it wouldn't even have been any problem until probably two when these things actually become issues. From what all the other heart moms with single ventricle babies are saying, Dominic should have been getting this since he was born. I am going to send the doctor a note and explain why we need it and what to write on the form. I really hope he gets it filled out soon. It would be nice to have it all done and some money to us before christmas.

Anyway things have been crazy busy around here. Dominic is getting his holter monitor on Friday at 2:30 so he will have to wear it for halloween, I don't know what he will think about this. I guess we will see! I changed the appointment because I didn't want him to miss any school.

Thank for checking in....I will keep you up to date on Dominic's upcoming appointments.


No comments: