Flowers and butterflies

Day 23:
Tate slept until 3 today. Just not feeling well. Pulmonary function tests were bumped to Monday because we learned last minute she would have to be disconnected from her pain meds for an hour. For Monday there will be a plan in place to cover her while she’s disconnected.

Tate started a twice daily iv antiviral today to knock out the cmv. She’s also back on replacement steroids for her low cortisol. Her adrenals just aren’t waking up and the stress her body is under and will be under makes it unsafe without replacement steroids. Tate isn’t happy about this as she is sensitive to all steroids, even low dose. Her dietician wasn’t satisfied with her oral intake as she’s still losing weight. We bartered for the weekend before adding more feeds. She’s able to eat more and more so I’m hoping she can get there on her own. Protein and salt are added to her feeds. She also gets multiple water boluses during the day as she can’t keep up with the additional fluid requirements for her POTS.

On this weekend’s agenda is decorating her room. Tate wants to make it cheery with flowers and butterflies.