This is a little delayed as we've already been here for a couple days now, but we have to keep track of everything. We can watch how he responds, so I am going to include more specifics this time to make it easier for us to do that.
Sunday was a good day until he got sick that night, losing his meds. Monday morning he seemed perfect, and was even happy and smiley! Then he got sick again, and it continued most of the day, which is the first time he has ever done that . We had Carousel come and check him over and he seemed fine, but we put some calls in to his pediatrician and nephrology to see if the reflux or the kidney stone could cause his issues to get that severe. After discussing everything with Nephrology on Tuesday we decided to bring him to the ER to check his kidneys. When we got here we requested to have labs drawn to check his Keto levels and hydration, which were way off. His CO2 level was a 9, and he should be at least at a 15, and his glucose was a 39 but should be above 50 while on Keto. He also started refusing bottles, causing him to get even more dehydrated. He was started on an IV for fluids and Sodium bicarb to help bring his CO2 levels back up, and they added a small amount of dextrose to his fluids to get his blood sugar back up. While all this was going on he had ultrasounds and xrays done of his chest and abdomen, but everything was clear and it doesnt look like the stone has changed at all since January, so that much is good news. Even though that was fine, we were admitted based on the blood results Tuesday night.
Overall, he is doing better and has started taking small bottles again. His sugars are falling here and there, but nothing overly concerning. His CO2 went up to 11, then back to 9, and when they just checked it again he was at a 12. The on call neuro has decided that with how acidic he is we need to try weaning Topomax again, and we are also going to bring his Keto ratio down from 3.5:1 to 2.5:1 and see how he does.
Hopefully those changes will kick in quickly and he will start feeling better soon! Thank you very much for the prayers and positive thoughts, it means a great deal to us all!
