continuation of last post...

So, about the vancomyacin, they called her reaction 'red man's syndrome' and the way we are getting around this is giving her the doses on a very slow IV drip. And that's definitely working. Just takes two hours to infuse the antibiotics.

and about the PICC line, I am REALLY havin a hard time deciding if a central line is still the best thing for her and as of right now, my decision to place another central line is still no. Yesterday it was a definite no.. and definitely against another PICC line that's for sure, but the GI today asked me to strongly reconsider placing a permanent central line into her chest. Her reason... Quinn has many bouts of pseudo obstructions that would require some form of hydration/nutrition and for the most part, we can handle these at home, but we have been handling them with IV hydration at home. She thinks we will be in the hospital even more if we don't get the central line in. All the GI docs here feel strongly for her need to have a permanent line placed. I emailed Dr. B (mito doc) and basically, he didn't give me much of an answer... just told me that in mito kids, central lines have a very high infection rate in mito kids and that it's best not to place one if it's not absolutely necessary. So, is Quinn having a central line absolutely necessary? What makes it absolutely necessary for her? That is a HUGE debate in my head. I'm leaning a lot towards... no, it's not absolutely necessary. So i need to battle with myself what would keep us in the hospital more... possible line infections, or pseudo episodes. And both the two weigh evenly in my mind. So for right now, I am saying no to a central line.

One other thing that we need to address is Quinn's swallowing problems. She won't drink. She is choking on all her drinks. and last night, when i gave her some chocolate, both my aunt and the nurse got to witness how difficult it was for Quinn to swallow. It has been mentioned to possibly do a swallow study tomorrow to try and see if she has a safe swallow. I think her swallow is safe, but i know she's also having a difficult time swallowing. She will however eat ice chips. and everytime i try to give he a drink of water, she either refuses and says she is going to choke on it, or she drinks it and ends up choking. So... that's a new issue. She has had issues swallowing in the past, but it got better.

so for the line placement, i still think the best thing to do here is to take her home without a central line and keep trying to push better fluid consumption and increase the rate of her feeds to a level that can both nourish her, and hydrate her. It's a fine line, but I do feel that it is our best option as of right now. If she runs into another episode where she absolutely needs hospital, we are going to go to CHLA, where her mito doc is.

Anyway, was jut told that if they don't put a central line in tomorrow, we will be here till middle of next week if we can continue getting clean cultures. *PLEASE CULTURES STAY CLEAN!!!* we've been here for 2 weeks and 2 days. so ready to go home... oh and my mom told me that my dogs ran away. and i really don't know how I am going to be able to pay my rent and car payment this month... this is a major stressor right now ugh!