Thursday, January 1, 2009

Poked and Prodded

We have spent the last two months trying to figure out what might be wrong with Eli.  We've had some very bad days...and even worse nights!  He's not sleeping through the night...which means he doesn't get his full night feed.  He gets very irritable in his Bronco, making day feeds hard.  We can't get all his calories in him.  Sometimes when on his tummy - which is how he sleeps all night - he pulls his knees up like it's painful.  His mood is sometimes very fussy - which isn't normal for him - but can be common in CP kids.  He's gassy.  His BM's aren't normal because his food intake varies from day to day. It's been a long and tiring road - mostly emotionally - for Lon and me this month.
What could it be?

Gall Stones?  Kidney Stones?   Nope!  Ultrasound on 12/31 said no to both.
UTI?  Nope!  Urinalysis said no.
Food Intolerances?  Has a dairy intolerance.  Possibly to Rice milk, too.  We've done some major changes to his diet!  Holy moley - it's craziness I tell ya.  We are introducing some real foods - finally - blended and pushed in via syringe into his g-tube extension.  Eli has had turkey, tuna with olive oil & celery, & grapefruit juice.  Our goal is more real  and blended foods!
Bowel Obstruction?  The x-ray from 12/30 didn't show it to be obstructed, but maybe backing up a bit causing a "poop loop" (my word, not the Docs) in his large intestine.  Could be causing pressure on his diaphragm, which would hurt.  We started with Miralax hopes of getting him going more than once a day to keep things moving and see if it relieves that issue.
Blood Work - We had his blood drawn on 12/30 also, to have it tested for food allergies again.  It's been over a year and we wanted to see where he was at now....since we are moving forward with the blended diet - we need to know which foods tend to be best for him.
Here he is showing off his bandages, as the lady couldn't get it on her first and second pokes on his left arm!  Then she calls Donnie over and he does it perfectly, the first poke in Eli's right arm.  [Note to self:  Always ask for Donnie first.  He is awesome with children!]


Heidi Case said...

Isnt Donny awesome! if hes the same one Im thinking of, he is great with kids