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We aren’t in Kansas anymore…

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We have all had a good couple of days bonding if nothing else. Grandparents have been taking care of Hiatt. Grandparents have been hanging out at the hospital. Brittany and I got a date night! We have to look at the bright side of life to keep our head up and drive ahead.

We seem to be getting a lot of news. Good and not great, but definitely nothing bad. It’s been difficult to update due to the fact that there are so many factors in motion and the updates change faster than I can write. They have even changed since I began to write this post.

All of the tests so far are coming back negative for virus and bacteria. This doesn’t mean for sure there is nothing, there is just nothing showing up. The issue is that Sutton still has the “wheezing” and there are a lot of things that could cause it. The doctors believe they know what is causing it, but I’ll wait to be sure before I update any more on that.

The next concern is the aspiration. We are back to rice cereal thickened formula for now, but there still seems to be some aspiration. Sutton also seems to be having some reflux issues which would explain the aspiration. They have started her on reflux meds to help. She will also undergo a Esophageal Ph test to determine the amount of reflux and best determine how to treat it. It is a 24 hour test that she will hopefully start early tomorrow. As for now, she is a little restless with the reflux but still manages to smile most of the time.

The most exciting thing today was that we had a tornado warning tonight. It was quite a sight to see the entire 5 east and wet floors move into the center of the building. Every CF child had to be kept 6feet from the other while staying clear of all windows. There were also the other patients, some even in hospital beds, moving into tight quarters. I can only imagine the logistics behind that, but the nurses and staff had it down to a science and it was flawless. On top of that, Brittany and Hiatt showed up in the middle of the the move. Hiatt was very sure to let everybody know that Sutton was his sister and she was sick in the hospital. After the warning was over, Hiatt and I went for dinner and Brittany got some one on one time with Sutton. In the end, it was a great day.

5 responses »

  1. Clicking my heels together…and praying….there’s no place like home. Hurry home, little family of ours. Love, Ya

  2. Murphy, Linda - Georgia Chapter

    Thinking of you guys…..thoughts & prayers that you will have answers soon and be home (and no more tornado warnings!.

  3. Thanks for keeping us posted on Sutton’s progress … we’re praying for all of you and hope that Sutton gets to come home very soon!
    Love, The Jackson

  4. Much love to all of our Burnetts…don’t forget that I can watch sweet Hiatt, if grandmas are otherwise disposed! You’re in our prayers!

  5. Celeste Schnabel

    Wow…sounds like it never slows down. Y’all are so good at keeping your chins up. Our love is with you!! XOXO


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