We've been home over a month now and all I can say is she's doing well! People are always asking "how is she?" And as I respond, "She's doing well" I know they are thinking of a healthy almost 3 year old girl with big brown eyes. Unfortunately doing well for Audrey means, she's thriving on IV nutrition given through her arm. She's still not up to even half of her j-tube feeds, her g-tube is continuously draining and she still goes through 18 syringes of medications per day. But she is doing better than she has in almost a year and for that we are thankful and able to enjoy her even more.
We have been fortunate to take some time out for the zoo and a trip to Sea World. Audrey and her brother love animals and little did we know how much Audrey would love Sea World! She asks to go back every single day! We learned somethings on our short trip. First, we cannot get a smaller car. The amount of things she requires just for two nights away, is staggering. Second, the nurses who work in the first aid station at Sea World are great! They were willing to keep her TPN and refrigerated meds for us so we had less to lag around all day. Thrid, we can do this! Yes, she was exhausted and didn't even get out of her stroller once all day. But, her new stroller lays down almost completely flat so she was able to take a 2 hour nap! It was also tricky making sure to keep her pick dry with so much water around, thank you glad press'n'seal!! That, being said it was a great time for us all, and so important to remind us we can do "normal" things with a twist.
I have gone back to my weekend, night shift job which has worked out well. I'm able to be home with Audrey and her brother all week and work during the weekend. It limits our family time some but it is definitely better for the kids right now. Audrey is thriving being at home and not exposed to other kids. She hasn't been sick since the last week of May! This is the first time she has gone a whole month without being ill since November!
With all this goodness going on, we have a big hurdle leaning over us. Audrey needs her tonsils out. Surgery is rough on her and will undoubtably set her back. Right now she is the strongest she's been in awhile so hopefully she will bounce right back. Surgery is already complicated because she needs a blood transfusion before surgery. Her blood count never recovered from her last hospital stay and has started dropping down again. This gives her a high heart rate and she has need her oxygen more in the past few days. She will also need her clotting factors checked since they were low with her last admission and tonsillectomies are notoriously bloody surgeries. So for now the plan is admission the night before for transfusion and lab check and then one night after to monitor oxygen and bleeding. We may also have to tag a g/j tube change on since we've been having some trouble with flushing. Hopefully it will just be the planed 2 day stay and not turn into something longer!
Here are some pictures of the fun we've been having: