Sunday, September 15, 2013

Making Changes

If it don't work, fix it!  We have reevaluated everything from meds to formula and have discussed at length WHY he vomits, WHY there's blood, WHY he's in so much pain, and what we can do to fix it.  We've made many changes.  I'm very optimistic that we are on the right track!

First of all, we've changed his formula from the Ketogenic powder formula, Ketocal, and switched to a soy based formula.  This formula is carb free and dairy free, and we keep him on his diet ratio by adding apple juice for carbs, and an mct oil emulsion for fat.  This should be gentler on his stomach, and if dairy was a problem for him, this eradicates that issue.  He started on continuous feeds of the new formula, mixed at half strength with water, yesterday.  He did throw up this morning, but he was coughing, and also off his motility med, and I think that combination was the culprit.  There was no blood in it!  The GI docs are thinking that the blood could be due to G-tube trauma, meaning that the force of vomiting causes irritation to the g-tube site and makes it bleed.  I think that makes sense.

We are wondering if the pain Levi is in so much is "perceived pain".  This does not mean that it's not real pain, but that possibly the g-tube surgery caused his threshold for pain to be lower, and that normal bodily functions (passing gas, etc) that is not painful for most of us, is very painful to him.  That would explain why Neurontin has worked so well for him, to the surprise of all his doctors.  We discussed switching to Lyrica at some point in the future if needed.  Friday night the neurologist increased all three daily doses of Neurontin, and he has not needed morphine, or any type of pain med, since!! 

I was wrong about the pulmonologist wanting to do a bronchoscope.  He wanted the ENT to scope his throat, which is what they did on Friday, and found that his tonsils and adenoids are huge.  Tuesday they will be removed.  They said it may not make much difference, or it could make a huge difference.  The sleep study showed that he had 15 sleep apnea episodes in one hour, causing him to change his sleep pattern that many times.  This happens to most people only once or twice an hour, if at all.  So at the very least he should be able to sleep better, improving his energy and mood through the day.  Best case scenario, it will cure his breathing issues.  It's actually possible that the size of the tonsils cause his gag reflex to be more sensitive, so it could help with the frequency of vomiting.  Better swallowing is another possible benefit.  Wouldn't it be wonderful if he could start having some small snacks by mouth!

So we are making a lot of changes and waiting to see what unfolds.  I have high hopes that these changes will address and fix the majority, if not all, of the problems he's been facing these last 13 months.  Please join us in praying for him!

He's been in a terrific mood today, bestowing us with tons of toothy grins.  Life would be so much more wonderful if that would become the norm for him!



  1. So good to hear that there is some improvement. Will continue to pray for Levi and for all of you. HUGS ... AND LOVE TO ALL. <3

  2. Thanks, Carolyn, love and hugs to you!!

  3. My family and I recently heard of Levi. Through a special acquaintance. I hope to spread word of your story and grow your support network. Praying everyone has a peaceful night and a well day tomo ♡

  4. Hi Mandie, It's so nice to hear from you. Thanks for your prayers, they mean so much!