overdue update

I think sometimes after bad appointments or bad days it's hard to put the feelings down in writing, like maybe somehow that's to much of a reality check...like what, writing it makes it real?! It has not been a good week, we are continuing to trend in the wrong direction...blood labs are moving in the wrong direction and his TPN (IV) infusion is now at 18 hours a day. For a 5 year old that is pretty upsetting...to the point of tears now. Basically after he's hooked up he can't play, he can't run, he can't move without us helping him. It is miserable...but it's where we have to be to keep him safe and at home. His body is craving nutrition and we can't seem to make that happen...cold hands, less peeing, pale, and all I can do is sit back and do what the dr's tell me...it's the absolute worst feeling in the world.
We leave for Columbus in 3 weeks...it can't come soon enough. I am usually pretty good at absorbing information and moving forward from it....we saw neurology on Wednesday..Kyle's tremors and tics are not getting better and actually are worse at times. The good news...it's not seizures...the bad news is that it's stress induced. That sweet child's body is so stressed that this is one way for his brain to deal with it...can I say it made me want to vomit. There are things that trigger it that make it worse..changing the dressing around his line is a very big stress for him and scares him...so by trying to keep him safe and infection free we send him into a full blown tremor that can last for hours.
We are slowly making progress with his food infusion into his j tube. It's not going that great, he's miserable. But we have to keep going forward...we have to keep trying.

xoxo
K