So after about 4 days in the hospital we got to go home last Friday.  There had been some complications with Zoe's Flolan central line and so ther cardiologist decided that she would be better off at home with us and we would be fine weening her off oxygen.  Due to her tubing being changed so often and by people other than Jason and I, her line got a blood clot in it  and leaked Flolan so Zoe didn't get the correct abmount of flolan for about 9 hours.  It is hard for all the hospital staff to know as much about the flolan as Jason and I do, due to them only having one or so patients a year on it.  They are fantastic there, but it requires a different set up than we use at home.  It diesn't seem to have bothered Zoe at all in the long term, so we are thankful for that.  It could have happened to a child who really depended on Flolan for survival and could have been devastating.  Zoe's cardiology nurse is going to do some training with hospital staff so hopefully this doesn't happen again.  Jason and I also know what to look for next time and what to reinforce to the nurses so it was a learning experience for all.  Her fever has been gone for a week or so it seemed it was just a matter of oxygen needs. It has been lovely to be back in our space,  Zoe is acting like everything is the same as always, she's such a trooper. Nothing ever phases her.

We've been home about a week and a half now and Zoe is doing great with her energy, feeds, etc.  She is still on oxygen and her cardiologist wants her to stay on .5 litre for another week or so just to rest her lungs.  Last Wednesday we had Zoe down to 1/8 of a litre and she was doing great but the next day she was requiring a bit more oxygen and so we took her into the pediatrician and they took an x-ray.  the cardiologist at childrens thought she might have a bit of a type of walking pneumonia so she was started on another atibiotic. It seems to be helping some,  she isn't as rattly in her lungs any more and except for the oxygen attatched to her nose, you'de never know anything was wrong.  She is crawling like crazy.  standing up, sitting down, moving like a mad woman-  can you just see the cord untangling we have been doing lately!!  Yesterday I decided that I needed to figure out a way to have Zoe wear her flolan pump so she can move more than 3 feet without the cord being stretched.  I was going to make a vest thing with a pouch on it and my sister mentioned those little "harness buddy" backpacks you see parents pulling their kids around with.  So today I went to target and got a monkey one- I took out the stuffing, put in some water proof padding and stuck the pump and icepacks in it and put it on Zoe's back.  It didn't seem to slow her down much.  She did get a bit stuck when she ended up on her back and couldn't roll over because of the weight of the pack-  we'll work on it.  But once she is off oxygen, this should give her total mobility!!  More as it happens.  Thanks for the love and Happy thanksgiving to everyone.  Jason and I sure have much to be thankful for this year!