Day 3-Morning

Things are looking up.

Cole is running around the halls, talking to all of the staff and causing trouble as usual. He continues to watch Woody more times than I can count. Whatever he wants, right? Everything else is out of his comfort zone, so I guess I can handle "He's the rootinist, tootinist cowboy in the wild, wild west!" running through my head constantly ;) I think that it makes it a little harder to deal with because he is in full hospital mode, which translates into, "I hate Mommy". Deep down inside, I know that he still loves me, but it is tough, when he pushes me away. I am so glad that Brian is here to comfort him.

He has found a toy vacuum in the toy closet and has set out to clean the halls of the NTU.Everyone loves the new janitor.

We are having issues with the pharmacy and trying to get a no carb, no sugar suspension of Keppra. Most medication for keto kids has to be made special because sugar is added to most children's medication. Cole immediately spits out the crushed tablets mixed with water. He won't swallow pills. The only way I can foresee him taking the med is if it is suspended in an elixir. The pharmacy here is not sure if they can compound Keppra, but then they come back and say that they can. The nurse practitioner said to be careful if they try to bring me and elixir here at the hospital. We should just continue with IV Keppra as long as his IV is in. The doctor is not very keen on this as IV Keppra is expensive. I don't care people that it costs more-I care that he gets it in his system! We have called a compound pharmacy in town and asked them to do the suspension carb-free, sugar-free. We can no longer buy Children's Tylenol, Motrin, etc. because of the sugar, so I think we are going to become friends with our pharmacist. We should take him a welcome to the family gift (I wonder if he likes Scentsy?)! If Cole gets sick, his anti-biotics have to be compounded. Unfortunately, our insurance does not pay for compounding as we found out with the nasal Versed. What are we going to do? Not get the drug that could save our child's life? Just like before, it will just have to be another thing to add to the list.

At this time, he is still making 3+ ketones (really good). His blood sugar is hovering in the normal range for a kid on the ketogenic diet. His bi-carb is low, making him acidodic and the nurse practitioner told me that she would be really worried if it was someone else's labs-however, she motioned to Cole running around the halls talking and laughing, saying that he looked great. I told her that he has been really sick before and we did not know it because he was acting happy, smiling, etc. I told her that we should make sure it is back to normal before I felt comfortable leaving. I'm not sure what they are going to do about this particular issue, I am just going to have to let them deal with it.The doctors feel that Cole's initiation period is over and he is officially "ON" the diet. We will continue to stay here today and take more time to get used to eating at a set time with set food, keeping an eye on his glucose and ketones. They have re-scheduled the lumbar puncture for tomorrow morning at 10, so Cole will be without food again tonight, but can have liquid until 7 am. After the spinal, we should be able to go home. This will be great to have a few days at home before things start to get crazy (wait-they already ARE crazy!).