Kayli has the go ahead to go home!!! She has not been producing Ketones, so the dietician lowered her daily caloric intake from 376 calories, to 248 (?) calories daily. The assumption is that since Kayli already required less than half the average calories of a toddler, her metabolism must be slow. The idea is to lower the calories, and push her into Ketosis. Originally, she was able to keep the chewable multivitamin, but now the dietician is changing it into a pill form.
In the Home setting:
Kayli will need to get her sugar levels checked every 4 hours, and she will need blood work in a couple of weeks. We will go to our local hospital, which has an exellent phlebotomist, who ALWAYS gets blood from Kayli! I once asked her how it is that she can get blood from Kayli, when many others cannot. Her quick and simple reply was, "I pray before every stick!" <3
Kayli's gram scale is being delivered today, and I will use my glucose meter until she gets one of her own. The outpatient clinic is set up for 2 weeks from now, and the orders are all being written for the home care nursing. All Kayli's meds should be ordered and ready for pick up from the pharmacy. I
have questioned Kayli's use of lipsmackers, lip moisturizer, because there is
likely to be carbs in it. But I feel that it would be minimal (she does
not swallow it) and it is literally the only smell sensory she has
currently. So, we will keep it for now.
While on the Ketogenic diet, we will have to monitor all products put on her (including mosquito spray and sunscreen) because she cannot have the carbohydrates.