The issue is what type of feed to give her thru the GTube. Right now I have Isosource 1.5 as recommended by her dietician. She tolerates it well overall, but when I give it for breakfast (240 ml) it just doesn't hold her well. She is hungry but can't take any more fluid volume than the 240. So I am trying Real Food Blends. Basically its prepared 'real' food that comes in pouches. It's much heavier than the Isosource, so I think its the answer for breakfast. For the next meal she gets mac and cheese and a banana and maybe vanilla pudding if she is still hungry. Then for the last meal she gets the Isosource because she never ate much anyway at this meal so the isosource should be plenty. The amount I give her depends on how many calories she still needs to round out her day.
So that's the latest on the food front. I'm going to keep up this schedule for a week or two to see how it goes. If she doesn't throw me any curve balls then I will see if the Real Food Blends can be covered by her insurance.
One odd thing this week, the past couple of evenings her skin gets very warm and her pulse goes up. Her hands are hot, which is unusual for her, but no true fever. So last evening I laid her down in her bed to get a better look at her and she relaxed, she cooled right off and her pulse returned to the usual. She was happy and giggly. I let her rest there until bedtime. All was well. Nothing ever stays the same right now, lots of changes with this awful BPAN.
