We are all so happy to report that we are home as of late this afternoon. We got all of our equipment set up yesterday and they wanted us to do at least one night there with our equipment before going home. We were all packed up and ready to go before 7AM. However they wanted to do xrays, then have all the doctors sign off. While we were waiting on the doctors Casey spiked a fever and a very high heart rate. We were so worried they would come in and see it and decide she needed to stay again. Finally late this afternoon they came by. The fever had broke when they got there and was on it’s way down. Luckily the doctors did not freak out.
Casey has to do BiPAP at home every night for 10 hours. In addition she has to have breathing treatments every4 hours. We go back a week from Monday for a follow up xray. As the xray improves (at Casey’s speed) we can start to cut back on stuff. We just have to watch and see how she does. I really hope that she can get off this machine soon.
The good news is that while she needs night BiPAP we will be able to get a night nurse a few night a week. We have never had night nursing before. We don’t really know what to expect.
For now Casey is eating 24×7 as well. This means we go back to how we did food when she came home from the NICU after she was born. We can only put in 4 hours at a time. So, every 4 hours we have to get up and get her food. The night nurse will help with this too.
We have a lot to do, but it is so much easier to manage all of the work at home. The next few weeks are going to require a lot of adjusting. Once we get used to all the new stuff at home I am sure it will fall into place.
We will keep you posted as we make progress at home – we hope everyone is well!