Last night was Callie’s first night on bipap and she did very well. She didn’t fight it much, mainly because she was completely exhausted.
She had one troublesome episode during the night, but we took the bipap machine off to deep-suction her. She still couldn’t keep her oxygen levels up after that, even with the bipap. But that was easily remedied by putting oxygen flow into the bipap machine.
Today she was much more alert and playful. She talked a lot and wanted to read books. She even smiled at some of the doctors, which was a first!
She wore the bipap again during her nap and did wonderfully. A lot of children with SMA take quickly to a bipap machine because they realize they can rest better and breathe easier with it.
Tonight, Callie will be getting something called Total Parenteral Nutrition–TPN–through her IV. That’s basically all the electrolytes, calories, protein, etc that she needs in a day. The TPN will be a regular order until her feeding improves.
I was hoping that Callie might be able to come home by the end of the week, but her doctors say that although it’s not impossible, it’s not likely.
She’s still a little too unstable from a respiratory standpoint and her lack of nutrition is a big hindrance as well. Her doctor wants her to have a couple days of rest on the bipap and then see how she’s doing. If she’s still not eating well, we’ll be discussing some other feeding options that could allow her to come home.
We appreciated the visits from our pastors yesterday and today. One of them even brought blueberries and Cheerios, Callie’s favorite foods.
Nathan and I are starting to feel the strain from our family not being together for this amount of time (Duke is a good hour and a half away from our home). We sincerely appreciate the support and prayers from so many people and especially from our church family.
It’s been a shock to us that a common virus followed by a cold has had such a dramatic impact on Callie’s health. We always knew it could, but really didn’t understand how bad it could be.