Faring… Stable

What a miracle is ondansetron, also know as Zofran. We still don’t know what’s wrong with Alden, but a well-timed dissolving pill keeps him vomit free. It’s been six days, which is the longest we’ve gone since this all began. There is some terrible cycle that needs to be broken, and what works is to slip that pill in his mouth around 2am. Some people shudder when I tell them I have a standing alarm set for that hour. It’s so much better than the alternative, though, I hardly feel it. If I have to give him a pill every day at 2am every damn day, I won’t consider that too terrible a sacrifice.

Treating a symptom is not the same as finding a cause or a cure. I’m determined to find the first and hopeful to find the second. I’ve heard lots of suggestions, the most likely sounding one so far being a nightmarish condition called “cyclical vomiting syndrome.” I suspect we’ll need a neurologist along with our gastroenterologist. The various doctors we’ve seen have also mentioned rheumatology and allergists. It’s a lot, and it’s confusing.

In hopes of cutting down on the dithering we’re working to get him into the University of Cincinnati Children’s Medical Center. That’s a high-wattage alternative, a research hospital with the #1 ranking in pediatric gastroenterology. I am trying not to indulge in the idea that they will save us, that they will fix us. We just need them to help us.

Alden’s pediatrician asked me last night if we’d tried a night without the Zofran. I told him we haven’t had the nerve. I know we’ll have to do that eventually, but until we get into UC we’re just going to keep doing what’s working.

Alden shows his IV rig to appreciative office workers across the way.

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11 responses to this post.

  1. I really hope Cincinnati helps you. Coraline had a horrible stomach bug a while back and Zofran was the only thing that made the vomiting stop. I can only imagine how exhausted, frustrated, and worried your whole family is that poor Alden is still sick. Sending positive, hopeful thoughts your way.

    Reply

  2. Posted by Brenda Cinnamon on January 27, 2012 at 3:22 pm

    God knows we are praying hard for a cure or at least an answer to what’s going on with your little man. Jillian he is so beautiful and I know you and Damon are running on pure adrenaline, but keep up the faith that this “too shall pass” and Elliot and Alden will be running through the house making wonderful noises!
    Maurice and I are keeping you all in our thoughts and prayers will keep an eye out for updates.

    Love Aunt B

    Reply

  3. I’m glad you updated, and I’m glad to see a picture.

    Be well.

    Susan

    Reply

  4. Posted by Emily on January 27, 2012 at 4:55 pm

    Someone just wrote in to Parents about their child having Cyclical Vomiting Syndrome. I had never heard of it, but now 2x in a week! Poor guy. He’s so sweet—you are being wonderful despite the agony. Keep fighting. xox

    Reply

  5. Posted by Virginia White on January 27, 2012 at 8:57 pm

    OMG…I am going through this same thing with my little boy. He is 6. I would love to talk with you. Please email me at REDACTED. A friend forwarded this to me…my jaw dropped as reading this as i thought we were the only ones in the world! My son had an MRI a month ago to rule out a brain tumor since the vomiting on happens at night…when he lies down. We have had lots of blood work and see a Gastroenterologist specialist Feburary 3rd. His doc started him on famotidine….no vomiting for 26 days so far!!! I’m with you, i will wake him up…whatever it takes. I would love to compare notes…my son has a few other odd things that occur when the vomiting happens. Hope to talk with you soon!!!!

    Reply

  6. Oh lord. I’m glad he’s at least stabilizing. Hope they find the cause soon, and Alden’s back on track ASAP.

    Reply

  7. Sending light and lots and lots of love to you all.

    Reply

  8. Posted by Jennie B. on January 28, 2012 at 5:23 pm

    Thanks for keeping us up-to-date Jillian. I hope you find answers soon and that Alden (and you) get some well-deserved relief.

    Reply

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