It is a nervous morning, as I find myself having to trust that the new hospital will have all the equipment, supplies, and medications for Kayli's new journey on the Ketogenic diet. I have been asked to bring a scale, a blender, and Ketostix. In reality, I am bringing suitcases filled with her medications, supplies, equipment, clothes, toys, and my clothes. In part, my concerns are that the hospital is new to us and may not have the appropriate support for my daughter's specific needs (the hospital team could not confirm the respiratory equipment nor medications they carry/use).
I am told that the first day of hospital admission is to start Kayli the diet with 1/3 her caloric intake to be Ketocal and 2/3 her current formula, Elecare. Day 2 will be 2/3 Ketocal and 1/3 Elecare. On day 3, Kayli will be going home on full Ketocal (Ketogenic diet). They will be doing some blood work to make sure her sugar levels are appropriate. This may pose a problem, because Kayli is a VERY hard "stick". She has a chest port, but we have not been able to draw back (get blood from it) since a month after she got it put in.
Although there are many challenges in this new journey, I am sure that the good Lord will guide us through the tough times. We hope to see a difference in her seizure activity in the next month. If so, we can start weaning her off her 2 seizure medications. We will know in about 3 months if the Ketogenic diet is the best treatment for Kayli's seizure disorders.