Friday, October 7, 2011

Will it ever end?

Pre-diagnosis, Caleb's only symptoms of anything being wrong were an unwillingness to eat, occasional vomiting of huge amounts, and poor weight gain (which goes hand-in-hand with the prior two symptoms).

During the one-month trial with appetite stimulants (pre-diagnosis), vomiting increased. After the one-month trial with steroids (post-diagnosis) vomiting increased to the point of needing IV fluids.

After going on the elemental diet with the NG tube, vomiting almost completely disappeared. After g-tube surgery, vomiting was practically nonexistent.

After getting a very tiny cold, vomiting increased drastically. After the cold went away, vomiting continued. After waiting a few weeks, we decided that we couldn't sit back, do laundry, and scrub the carpets in hopes that the vomiting would go away on its own.

We tried a medication for vomiting. We tried slowing down the rate at which his feeding goes into his stomach. We tried making sure that he NEVER had more than 7 ounces of formula in his stomach at a time (that's the cool thing about the g-tube--we can check the residuals from his last meal and see just how fast he is digesting his food, so we can make sure that we aren't overfilling him). We tried elevating the head of his bed so his reflux wouldn't be so bad while laying down. We stopped giving him foods orally, because every time we did he would throw up. Calories and weight gain are more important at this point than eating skills. We'll work on eating later. And today we tried doing a continuous feed (where I keep him attached to the feeding pump all day so the formula can be slowly pumped in). So far he has thrown up twice in the past few hours.

I'm lost. I don't know what else to do. I thought this would solve all of our problems, not create new ones. I don't know how much longer I can handle watching my child projectile vomit uncontrollably.



Patrick, Adrienne, & Bella said...

:-( you're always in my thoughts and prayers.

Katie B said...

:( I don't have a clue. The nurses and doctors must have some ideas for you. This is just too sad.

brenkachicka said...

This is terrible news. Vomit should never ever be a part of anyone's "normal." Especially for a little guy like Caleb.

emilia. said...

i love you guys so much. i'll be praying you and the doctors find a solution.

Coffee Mama said...

I just found your blog. I have a 6 year old with EGE in the small bowel as well. Feel free to take a look at our blog Journey through food allergies and EGID. Have you ever taken Caleb off all foods and just given him formula? In specialty clinics (and when parents are at their wits end like I've been) they recommend that for 3 months to allow the gut to heal. Then they scope again to make sure all the Eos are gone. This was the only thing that made my son better. He doesn't take anymore meds, just for his asthma. His GI symptoms are almost non-existent.