Today Callie seems more like her usual self than she has in more than a week, and we are very encouraged.
She’s had a better appetite and more energy, and she has rested well, both last night and during her afternoon nap today.
She still has more secretions than she can handle, but consistent respiratory therapy keeps her oxygen saturation at a safe level during the day, and her bipap machine does the same while she’s asleep.
We’ve started the process of getting Callie a bipap machine for home. The hospital staff likely will switch Callie to a home model while she’s in the hospital so we can learn how to use it.
We don’t know when Callie will be able to go home, but today we started to feel that taking her home is once again a possibility. We’re aiming for early next week.
Nutrition is still a concern. There are many days that Callie doesn’t take in enough nutrition to maintain her weight, even when she’s well.
So the idea of a feeding tube – something that has been on our minds for about six months – has surfaced again. Callie had two tests this morning to determine what kind of tube would work best.
But if Callie continues to eat and drink as she did today, we will not need a feeding tube or any other kind of intravenous nutrition (PICC line or central line) during this admission. Instead, we could wait until she’s well and stronger before undergoing the surgical procedure required for a feeding tube. Then we’d have the tube in place so that her next illness would not be exacerbated by a lack of nutrition.
We hope to learn (and post) more about that tomorrow.
Family and friends from near and far continue to be a remarkable source of strength for our family. Thank you for your help, your kind words and your prayers.