Friday, June 7, 2013

Many Changes and Feeling Better

Levi is finally starting to feel better again!  The last few mornings he woke up with smiles.  He's enjoying all the activities he liked before the colostomy surgery -- bouncing, playing with his legs and arms, watching TV, sitting outside -- which was nearly two months ago now.  So it's been two months since he's been happy, and ten months since the feeding tube surgery when all the horrible GI issues (vomiting, unable to have bowel movements, etc) began.  I am so glad he doesn't have any surgeries coming up!

The motility specialist from Cincinnati recommended trying Neurontin, and after our GI and neurologist conferred, they decided to prescribe it.  He should be starting it today or tomorrow.  I'm looking forward to it.  Even though he's feeling better, he still has episodes of pain, and we are hoping that since the motility issues are neurological, this med will help him to feel better.  There's just no real way to tell if he is feeling pain from this or not, but I believe he is.

He is also having more seizures.  They are still only lasting 1-3 seconds, and since he's cutting so many teeth I wasn't too concerned, considering pain of any kind can lower the threshold for seizures.  I was reading on the ketogenic website forum, and learned that teething can actually lower the ketones.  He has always maintained large ketones so I rarely check, but sure enough he has had low to moderate ketones.  I spoke with the dietitian and we decided to raise his ratio to 4:1, and also raise his calories.  He hasn't vomited in two months, but still was not putting on much weight.  He is at 0 percentile, but on the bright side his BMI is 9, and it was in the negative before.  He's been tolerating the new recipe very well, and we wonder if the extra nutrition is part of the reason for his happiness.  Already we are noticing that his cheeks, arms, and legs are getting pudgier.  He's so much more solid now, too.  Yesterday he was holding his head and trunk remarkably well!

The last time I changed his colostomy bag I found that the stoma had shrunk to about half the size it was when the bag was placed.  The exposed skin had an angry rash and had completely broken down over a large portion.  It looked so painful I wanted to cry for him!  The fix for this a product called stoma powder, which is sprinkled over the raw area, then patted with a wet spongy stoma care wipe that creates a seal over the powder.  I caked on three layers before placing a new bag, and he felt better almost immediately.  I'll be changing it again tonight and hope to see that it's completely healed.

Levi's sweet happy smiles!

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