Saturday, January 10, 2009

We are FINALLY home

We finally made it home today!! We detoured to spend the night with Jake last night since he was gone working.

I guess I left off on my last post before seeing GI. We met with the GI, Dr. Tung(which Kylie thought was a great name! :) ) on Thursday. She wasn't hugely concerned about the swallow study results but said yes, for safety he should have his liquids thickened. He does have Dysphagia which just means difficulty swallowing but hey, I guess when you have a long list of diagnoses you might as well make it impressive. She also suspects he has Delayed Gastric Emptying which is basically what it sounds like, his stomach doesn't empty as fast as it should which would explain why he's spitting up food 4-5 hours after he eats. They can do a scan to see if he has that or just trial the med, which is erythromycin but of course the med can cause more seizures so ugh, I don't know that we'll do anything right now. I have to talk to her on Monday so we'll probably decide what to do for sure then.

He also obviously has reflux and she is going to put him on Prilosec but wanted to do a scope first because sometimes reflux is caused by allergies and this scope can indicate if the reflux is caused by an allergy and it if is then we could possibly remove the allergen and take care of the reflux. Not likely but possible... His scope went fine and the surgeon said it looked pretty good. He said there's an area in the lower esophagus that might show something but he'd wait to see what the biopsy's of the area showed and assumed it would turn out to be nothing.

The GI said to continue to offer him food first but if he won't eat to give him the Pediasure. It isn't just normal toddler pickiness and there's a reason(or a million) as to why he has a less than stellar appetite. Some days he does pretty well and other days he eats basically nothing. It could be the Topamax, which can cause weight loss, and she thought we could possibly switch but it's been the only med to give us some seizure control. It could be the DGE(delayed gastric emptying) which keeps his stomach full longer so he doesn't feel hungry, it could be the swallowing issues are annoying him enough not to want to eat, or..... your guess is as good as mine. He has gained weight though so the Pediasure is a good thing. If he quits drinking the Pediasure that would mean a feeding tube but thankfully I don't ever see that happening because he LOVES the Pediasure and would drink as many a day as I would let him. He stashes them around the house and you'll be sitting in the chair watching tv and he'll whip one out that he had hidden in the magazine rack and say, "Want ju!!!!" over and over again until someone(usually dad) gives in! ;)

I forgot to mention that I talked to the Epileptologist because Emeric's skin has been mottled and sort of purplish/blue at times and a lot of times his face is really hot and flushed. He said it could easily be Autonomic Dysfunction but unless it's severe he'd rather not try to treat it because he said it's a huge balancing act and a hard one. It would also explain his heat and cold intolerances and possibly his sometimes wacky blood sugars.

Tonight now I changed Emeric's diaper before bed and his stool had blood in it. It was really noticeable and I've never seen blood in his stool so it surprised me. I'm waiting on a call back from Mayo GI. Hopefully it's nothing but it was bright red so it's obviously fresh!

Well, sorry for such a long update!


John and Melissa said...

try the "Simply Thick" thickener if you haven't. Very few places carry it, I always ordered online. That is what the hospital suggested that we use when we could still drink pediasure. It is the easiest to use and kids can't tell the difference if it is mixed in. They will send it to your fron door... You can order it in to mix in "bulk" or individual packages.... Comes as a "gel form"

Nicole said...

Yes, the GI mentioned this! Thanks Melissa! I do think I'm going to order it because the thick and easy is just too noticeable!

L.A. said...

Nicole, I am amazed at your tenacity. you are one amazing woman. I am praying for my little "twin" Emeric.

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