Tuesday, May 8, 2012

Ketogenic Diet Day One

We arrived at the hospital at 8 am and went through the usual admitting.  We got Levi settled into a room, and were thrilled that he didn't need to be hooked up to monitors.  That meant we could take him to the cafeteria to eat with us, or go for walks, or what have you.  Definitely nice to have other options besides being stuck in one room!  I met with the dietitian, Jamie, and went over the meal plan.  Levi was to drink 3 five ounce bottles of ketocal today, with no solid food.  I learned how to test his urine with keto strips.  They took his blood sugar level to get a baseline, which was a finger stick, but he barely whimpered.  Such a good boy!  We met with the neurology team and discussed medications.  Since sugars are strictly limited on the diet, we had to switch four of his six meds to pill form, and in some cases the dosages had to be changed slightly.

Levi had his first bottle of ketocal at noon.  I have to admit I was nervous.  First, he doesn't typically eat much at lunchtime, and I didn't know how he would respond to a new formula.  He did amazing!  Either he liked it better than Nutren Jr, or he didn't really notice a difference.  He got through his usual three ounces and started to stall out.  He was making sucking motions but not drinking.  Remembering the early days when he was a newborn and the OT had to use a lot of chin and cheek support, I squeezed his little cheeks slightly, and lo and behold, he was drinking again!  What a relief!  He finished every drop of that bottle, and the four o clock bottle.  The eight o clock bottle was a completely different story.  The meds started trickling in from the pharmacy (once we got them all straightened out), but of course they were pills, and we had no food to sprinkle them on.  SO the nurses put them in a bit of water and squirted them in his mouth with a syringe.  I have to say, he did better than I would have!  Except for gagging once, he took all of them.  However, he just couldn't make it all the way through the eight o clock bottle.  He has never liked taking food late in the evening, and he was getting tired.  He did drink half of it.  By the time 10:00 rolled around we were both exhausted.  So I will speak with Jamie in the morning and see what she wants to do about it.  My guess is we will leave the meal plan as it is and see how he does tomorrow night.  Maybe he just has to get used to it.

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