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It has already been almost a week! It feels like we just came home yesterday. I think we have been going nonstop the entire week. Good new, it makes the time fly. Bad news, we are exhausted! We spent Saturday evening and Sunday trying to get caught up on laundry, TV and just resting. Casey …

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 …

Casey has had a few good days in a row now. The doctors have mentioned being able to continue her positive pressure machine for her lung at home. Just the mention of the word “home” is what we have been waiting to hear – we obviously don’t have a date yet, but we are getting …

Friday started the weekend out so well. We got the call to cancel the bronc, then we heard her xray had shown some improvements. Then Saturday and Sunday the xray stayed pretty much the same. We were hoping to back off a few treatments, but that has not happened just yet. Last night around 3AM …

What a crazy few days we have had. We do have good news- Casey is NOT going for surgery this morning. She was scheduled for a 9AM broncoscopy. She was all prepped and ready to go. Then last minute they said wait, it may not be necessary. The increased bipap pressure night before last helped …

We had another care coordination meeting today with the doctors, but it was much smaller than last week. This is mostly because Casey’s feeding is going well and that’s one less thing to talk about. However, her lung continues to be a real problem that is not responding to treatment. Casey has looked a little …

We are up then we are down, then up again, then down again. So stressful. Last Wednesday Casey had a wonderful xray. Then Thursday it looked collapsed again. Casey worked hard all weekend. Each day her xray looked a tiny bit better. On Sunday her xray looked a lot better. We expected this mornings xray …

Casey has been pretty busy. She has had 3 procedures in the past 3 days (PIC on Wed, Upper GI Thur, and her GJ placed yesterday morning). All 3 were hard on her. She did great though. Tim had to step out but they let me stay with her for the GJ. It took a …

Casey had a pretty rough night and morning. She seems to be having some tummy issues. She HATES poops. She usually has just one a day. Between 8PM yesterday and noon today she had 5 or 6 (a lot for her). each one got her a little more worked up. Between that and the aggressive …