Things are looking up. We are heading home in a couple of hours. Zoe was off oxygen all yesterday. She was on a little overnight for a sleep study- unfortunately she didn't cooperate and stayed awake until 3:00 in the morning(the study ran till 6AM). She has been a tired little girl today : )
We decided to leave the NG tube in for a little while longer, just to make it a little easier on her (and us) to stay hydrated and get her meds in. We will still have to revisit the issue of home oxygen at night for Zoe's sleep apnea (great, another new dignosis!) and look at putting a Port in for IV and bloodwork access in the future. We also need to plan Zoe's eye surgery (they are planning on closing Zoe's tear ducts to treat her dry eyes caused by her lack of tear production) but for today we are going home. It will be nice to just relax in our own space as a family. We've been here for 13 days- Genevieve and Ailsa have been going home most nights while I stay here with Zoe. I did get to spend one night at a nearby hotel- very fancy! Between work (both Genevieve and I work at the hospital Zoe is treated) I have been here for the majority of 16 days. Begins to feel like you live here. It will defianetly be nice to be home. I have missed having my girls together. Thanks to everyone to helped out while we were here with giving us breaks, lending an extra set of hands, buying us tea etc.
Zoe is always on isolation when she is in and not able to use her walker, which is very hard on her. We try to bring in her walker round about the time she is getting released so she can triumphantly walk out of here on her own terms. I am looking forward to seeing that today.
The Home of the Brave
1 week ago