When she woke up she had a jello and cream snack and then hung out until afternoon medicine. She was pretty drowsy all day but we were told that that is very normal when your body is transitioning from burning carbs & sugars for energy to burning fats.
The VEEG techs came in and took off the EEG leads and told us that Dr. Malik received the information he needed and that they got a good read on her even though she didn't have a seizure while hooked up.
For lunch she had level 2 chicken with cream, butter and applesauce. She ate it pretty well and then we went over to the playroom to get her out of the hospital room and walking around the halls and playing with toys. She really enjoyed getting out. Our dietitian found Rayleigh and I in the playroom and asked if we were ready to go to the meal room and make and plan some meals for Rayleigh to eat for the next day. We took Rayleigh back to our room and a volunteer and nurse stayed with her while Michael and I went with the dietitian.
We learned how to use the gram scale, how to weigh out her foods, how to read the recipes and how to use the Ketocalculator. The Ketocalculator is where her recipes are stored and the dietitian enters her specific weight and her ratio of the diet (3:1) and the recipes tell us how much each portion of the meal should weigh out. It's pretty neat and makes it easier than we expected. We will be spending more time in the kitchen preparing her meals than ever before but if there is some seizure control with this diet then it's all worth it!
When we got done the nurse and volunteer told us that Rayleigh was pretty sleepy but happy while we were gone. The nurse brought in some KetoCal formula mixed with just a little apple juice and some water. She did NOT like it. We gave her some time and tried again but same result. We were getting worried that she would get dehydrated. We began trying to find ways to keep her drinking - she wouldn't drink water or the KetoCal snack all day.
She ate every bite of her dinner but she was eating a little bit slower than usual. Normally, you give the kid a bite and like a baby bird she opens her mouth and whines for more. But not during dinner last night. It wasn't that she didn't like what she was eating, it was more like she was exhausted. So we got through dinner, tried a little water with no luck and then we watched a movie in bed. Michael noted how quiet she was during dinner, that's usually her cranky period but she didn't seem to have it in her on diet day #2. After the movie, though, she was doing some good propping and sitting before medicine.
Medicine went pretty well but about an hour and a half later she was still wide awake so we thought it would be a good time to try the KetoCal formula snack a second time. Almost immediately after getting the nipple of the bottle in her mouth she threw up. It was so horrible for her. She has never thrown up like this. Yeah, she's spit up milk here and there if she gets too active after a full cup of milk but never like that night. We paged the nurse and after getting things cleaned up we began our questions: "Is she not tolerating the diet?", "Is it something new she ate like eggs?", "Will she be ok?", "Is it because she's not getting enough liquids?", "Is it the apple juice mixed with formula?".
Pretty much all questions were half answered and we were told that we'll have to wait until the morning to talk to the nutritionist but because it was only the one time she was probably fine and it was probably a reaction to the transaction of the diet.
Her blood sugar levels were getting lower when she was checked at 11:45p but nothing to be concerned about so we all went to bed and got a decent night's sleep.
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