Tummy Issues, but What is the Cause?

Saturday was 16 days straight that Levi had vomited at least once a day.  We had had enough!  We took him down to only diluted Pedialyte that day, and he had no more vomiting.  The next afternoon we added chicken bullion soup, which is the next step for sick days on the Ketogenic diet.  He did well with that, too, so Monday we moved him to some feeds of Ketocal, the Ketogenic formula.  Instead of putting the feeds through a pump over an hour, we trickled it into a large syringe and let it flow into his tummy by gravity over about 15 minutes.  We began with one ounce and were able to progress over the next couple days to 2 1/2 to 3 ounces at a time.  He cried with the formula, but no vomiting.  Interestingly enough, he didn't cry when given water or Pedialyte.  So last night I decided it was time to try 4 ounces through the pump.  He did fine.  This morning I was expecting him to be absolutely fine and began another 4 ounce feed with 1/2 the prescribed MCT oil (this is a fatty medium chain triglyceride that raises the diet ratio to 3.5:1).  He fussed throughout the feed, but I didn't think too much of it.  Not five minutes after it was finished he vomited every bit of it.  How upsetting!  He had gone three full days without throwing up, I had really thought it was over!  He's been able to take dilute Pedialyte and small bits of formula again.  I tried to give him 2 ounces this evening but only made it through one before he began gagging.  I plan to start continuous feeds in the morning for the entire day so his little body can get the nutrition it needs.

We have a GI appointment on Friday, and I'm very much looking forward to hearing what his doctor has to say.  Originally when they planned the G-tube surgery they were also going to perform a Fundoplication (a stomach surgery to correct GERD, or reflux) but since he was taking goal feeds with no reflux the doctors decided that it wasn't necessary.  We don't really know what's going on, but we think reflux is unlikely since the Nexium has been controlling it, and the vomiting began so very suddenly.  Hopefully everything is fine and it's just taking his tummy a while to rebound after the extreme gastroenteritis.  Please keep Levi in your prayers!!

This pic was taken at our last hospital stay.  St. Louis Cardinals baseball player Lance Lynn was passing out Build a Bear toys wearing Cards shirts to the children, and he autographed the shirt.  He was so kind and compassionate, we really enjoyed the visit!!

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.