Kayli was behind on the diet schedule because she was started late in day (evening) on Friday. Yesterday was a "catch up" day where the new food was pushed through a feeding pump for 16 hours straight. Kayli handled it like a champ! After they gave her the juice, her blood sugar went back up to normal range, and she has been maintaining it well even though she has been getting decreasing amounts of sugar! Kayli was suppose to get some blood work to check some levels, but her chest port is not pulling back any blood and she is such a hard stick that they were not able to draw any labs. The nurses tried giving her 2 TPA treatments via her chest port to break up any possible blood clots, but ultimately the port does not draw back.
Yesterday, Kayli and I had a visitor! Another Mom of a child with Trisomy came to visit us! Kelly's daughter, Kaiya, also has Full Trisomy 18, and Kaiya is 10 years old! While the hospital and supply company did not have the new food set up for Kayli's discharge, Kelly brought the food left over from Kaiya's Ketogenic trial! Thanks to Kelly and Kaiya, Kayli will have food at home, and will not have to stay at the hospital until it is ready from the supply company! Kelly also brought Kayli and I bracelets for 3ELove! They are a great organization, and we are wearing our bracelets proudly! You can click on this link to learn more about the wonderful organization! 3eLove
Thank you Kelly and Kaiya!!!
Today, Kayli started on the full Ketogenic diet. We expect her Ketone levels to climb so that she will go into Ketosis (where her body works off Ketones instead of sugar/carbohydrates). So far, Kayli does not have any ketones in her urine output, but we are still hopeful because she only just started the full diet. Hopefully by this evening, she will start increasing the Ketone level. Originally Kayli was to go home today, but the dr decided it is best to have her on a full day of the full Ketogenic diet and to get blood work (via an artery) tomorrow when she is producing Ketones. I am fine with keeping her in the hospital another day because we are expecting an ice storm today and it would be very dangerous driving home in the dark tonight.
If Kayli starts producing Ketones, has no issues with the full diet, and the dr can get blood from Kayli's artery...she will be able to go home tomorrow afternoon! Directly below, is a picture of our friend, Kelly, with Kayli! <3
For now, Kayli is resting (the fatty food is making her tired). Although the diet is known for making a person constipated, it has affected Kayli quite the contrary. I have not been holding her because she is leaking out her diaper with the extra fluids and runny stool. lol I know from first hand that it gets pretty uncomfortable in a hospital bed, and you can start to feel down. When you get a shower/washed up, it lightens your spirits, so I am excited to get her in the bathtub during her next food break!