Hi smileycrissy.
So today has been a long day. We packed up and travelled the 2.5 hours to see her GI Specialist and get ready for her surgery in the morning. We have to be at the hospital at 6am, and her surgery is scheduled for 8am. I am sooo nervous.
We aren't sure how long they are going to keep her post surgery. We've heard some say she'll be going home say day (with quite a few shocked by this prospect) and a few - her GI doc included, who have said to get comfy, she'll be there for a few days. So I have no idea what is going on, and I hate not having a plan.
Her GI doctor put the application for out of Country care to our Government, so we now wait. Apparently it takes 4-8 weeks to hear back, and barring any hold ups he is pretty sure it should go through and hopefully in the next few months, we'll be at Nationwide Children's Hospital in Columbus Ohio. He is thinking a 2 week admission, for a full range of testing and hopefully we get some concrete answers. He decided after much research that the best place for her to be is there, rather then Children's of Cincinatti or Children's of Philly. So we now wait. He said every 2 weeks he wants us calling him so he can get on calling the Government, so that is what we will do. He thinks that her history is telling enough and that he is hoping that everyone else will see that she can't go on the way she has been. That she needs things that Canada can't offer her anymore. He said its only costing the Government more $$ keeping her here. He said, if she doesn't get the help she needs sooner then later, he is worried of what the outcome is going to be.
He did say that possibly sooner then later, we need to consider at home TPN. While using it at home is dangerous, he said we might need to take the risks of her getting an infection in her port because something needs to give health wise and weight wise. He said, we are getting to the point with her, that her low weight and malnutrition is more dangerous then the possibility of at home TPN. That is something we need to discuss with her Paed and Dietician back home on Friday.
He is also putting in a referral for her to see an Immunologist, for her IGA deficiency. He is wondering if she would benefit from IVIG therapy. So we'll see what that brings when she gets in.
So somewhat of a productive day, somewhat frustrating. In the end, as long as we can get Peanut the care she needs, then we'll do whatever we have to.
Thanks for the tips Joanne!! I'm going to read your day 2 TR report tomorrow. Can't wait!
I'll get over it, i've got you two at least, lol. Hopefully some more will come out of the woodwork.
Of course, I really COULD talk to a wall in real life 
, my hubby always says if I can't get someone to talk, no one can. 
Hopefully I won't bore you too much. 
