Monday, March 21, 2011

A bump in the road.

The pediatrician is off leading a group of "doclings" residents and doing good in the world. Which is something great, and rather inspiring! But I warned him (and prepared myself) at our appointment last week that when he leaves the country, we all know something's going to go down that we'll 'need' him for. Pessimistic or not...that's how Wyatt 'rolls', folks.

It wasn't a catastrophe, per se, but a bump in the road, I guess you could call it. Our weekend didn't start off as originally planned. Wyatt was in significant pain saturday morning after receiving his morning doses of meds. We began emailing back and forth with the pediatrician, answering questions and clarifying what was happening. With the information that we had provided he advised us to start draining Wyatt's J-tube along with his G-tube to see if that would provide him any relief. It worked and brought his pain level down a couple of notches on the pain scale, which provided us with a sense of relief.

His GI tract is in a tizzy. Clearly it's largely dysfunctional in the first place...ergo the IV nutritional status. But we were seeing signs of the impending episode since last week. Nothing new there, but he's understandably uncomfortable. Nothing going in and or absorbing (medicines) and nothing coming out. We're draining the J-tube intermittently between the various doses of medication to provide relief when he's feeling the most pain, while draining the G-tube continously. Today, as he's feeling relief of the pain and we unhook him from draining the J-tube (to give meds and allow time for them to absorb as much as they're going to), he quickly starts to feel poor again. We have a crabby, hurting boy on our hands.

On a happier note: Sunday we were able to schedule a time to meet with Wyatt's wonderful teacher for a few hours and finish a project that they have been working on for months. He was very excited, as was I! He put so much hard work and thought into this book. Dedicated to "my Dad" and finshed with an about the author page and all. It's now 'published' and appropriately titled "Wyatt's World". The book is about his very own amusement park and each page describes a ride and/or area of the park in detail. It's perfection. He has read and re-read his book repeatedly since finishing. He not so patiently waited all morning to share it with his vision instructor and the nurse as they came to our home for their scheduled times. He's looking forward to the day we plan to visit school and share it with his classroom full of friends!

Print Friendly and PDF


  1. so sorry to hear that he is having stomach pain. i'm happy though that the draining is at least able to help him, can you give him any meds to help alleviate the left over pain? Poor fella.

    So cool about the book! wyatt's world is a great title too!

  2. We give tylenol as he tolerates (no motrin allowed) and we upped his amitryptaline dosage on Friday. But anything more that we put into his system produces more discomfort and pain. The most relief seems to come from draining the J, though we can't do it continously because that's how he receives some of his meds (and we seem to have just made improvement in hydration). It's a tough spot.