Today my poor boy woke up not really wanting to drink or eat anything. He was served a keto eggnog again but refused it. They tried a different approach with a combo of keto cal and coconut milk with a very small serving of plain yogurt – coconut milk and yogurt being familiar foods that he enjoys. He refused it all.
Lunch time came. Scrambled eggs with cream and butter, served with sides of bacon and applesauce. He was so hungry at this point he could not refuse. He loved it and he ate every drop! He seemed to perk up momentarily, but became extremely lethargic as the day progressed. Blood tests revealed acidosis and borderline glucose level prior to eating. Food helped with glucose level, however his CO2 level was only 12 when it should have been 21. The only form of medication the the hospital had was liquid. That was a fiasco- first of all, liquid medicine is not ketogenic. Secondly, he hates liquid medicine. Spitting and refusing the meds, eventually the nurse and I had to hold him down. Throughout the day he continued to experience complete lethargy. He took a nap today – I am sure his sleepiness was a mix of the lethargy caused by acidosis, and being exhausted from the trauma of being held down and forced to take medication against his will.
I have requested that the hospital have the tablet form for his next dose. The nurse says they are trying to order it. He takes Topamax in pill form on his food, and I know I could get him to take the other pills this way too, both avoiding the trauma and extra carbs from the liquid.
Surprisingly his ketones were only at 40 earlier today…I thought they may be a little higher.
Tonight he was served his first oopsie roll with a nut butter mixture made from macadamia nuts and peanut butter together with sugar free jelly. He loved it and ate it all!
Around 8pm his final meal was served, which was a very small portion of scrambled eggs with cream and butter, along with bacon and apple sauce – half as much as earlier.
All day we hoped and prayed that he would begin to bounce back from this acidosis. I asked doctor if this may be increased because of Topamax. I have read several articles about Topamax and acid levels in the blood. His Doctor is still not willing to look at any reduction of medications…yet.
By evening his ketones were above 80, and his personality was beginning to shine through.
Praying for more breakthrough!
This is the small evening meal with bacon eggs and applesauce….and the liquid around the eggs is butter that must be scraped off with a spatula and eaten.