Tuesday, May 14, 2013

GI appointment tomorrow

We have an appointment at 11:45 with GI tomorrow to discuss options. A GJ tube isn't a reflux and aspiration pneumonia "cure-all", it comes with its own risks and complications. We need to talk to some experts before we decide what to do. We've asked other MLD parents and some have had great luck with a GJ and some think it's better to stick with a G because the GJ caused all kinds of other issues. We can also "try" a GJ and see how it goes and if it's no good, we can switch him back to a G. We might also be told to not even think about a GJ now and just put him on continuous feeds instead of 3 bolus feeds. He usually gets breakfast, lunch and dinner at a rate of 90ml(3oz)/hr for 2 hours, so 6oz 3x/day and it takes 6hours to feed him those 18oz. Except when he's sick, then we slow it down substantially and usually change the pediasure to pedialyte. Or dilute one or the other with water. But even if we slow down his feeds, he's still digesting slower than molasses. He threw up pediasure today more than 5 hours after he had any.

He's also so medically fragile that we're afraid of the Drs needing to use general anesthesia on him to switch in the GJ, but apparently some doctors insist on the anesthesia and some don't see a need for it. The procedure is described as "uncomfortable" and it needs to be done in radiology so they can make sure it's placed properly in the digestive tract, but it's done through his current Gtube site, so not real "surgery" or cutting required.

So much to think about.

I'm curious what we'll hear tomorrow at the appointment. Even at a Children's Hospital they don't often have children moving backwards in their ability to eat, from eating by mouth, to Gtube, to GJ tube and pretty much nobody in the hospital, except for the neurology department have ever heard of this rare disease. And the neurologists have only read about it in text books, he's the first case ever at this hospital.

The last time we saw a Dr. in GI she said to us as we walked out the door that we were doing a "great job with his feedings" and to "keep it up, one day he may not even need a Gtube anymore." Ugh. Say what? No amount of PT in the world can teach his muscles how to function again. This disease is progressive and hearing her say that made me even more sad and lonely.

This awful disease is a big mystery even to the doctors.


  1. It is a mystery to the doctors. Very sad they can't put more money into the cure. Until a famous person is faced with this awful disease it won't happen. God bless you and your little boy!

  2. I continue to pray for your little Oliver.

  3. We will continue to pray for all of you.

  4. Praying for your beautiful boy.