We had a day of tests and doctors appointments at Sick Kids Hospital today. We are working with a dietician there to see if Stella’s caloric needs are being met. Stella is fed 99% through a G-tube and because she doesn’t move as much as you or I do in a day its difficult to calculate how much formula we should be giving her each day. Too little and her body doesn’t receive the energy it needs to help her through the day. She will be too lethargic. She may also not be getting the correct amount of vitamins and nutrients for proper growth and development. On the other hand, too much and the added weigh she gains could negatively impact her ability to move as each ounce heavier her arms, or legs are means she can move them less. Very tricky.
I have to give it to her she is such a champ. She only cries during the cap-gas test as she gets a small needle to draw blood to test her carbon dioxide levels. These levels if high would obviously be dangerous and we would need to adjust her ventilation needs.
Stella will be having another sleep study shortly to see if her bipap settings are correctly supporting her respiratory needs.