GI Update: Tube Time

This morning we took The Littlest Apple for his appointment with the new doctor, a pediatric gastric motility specialist.

The Littlest Apple hasn’t gained ANY weight since his January appointment (but he didn’t lose weight either, a small comfort).  He still weighs 21 pounds, but he is almost an inch taller now.  Neither of those things was a big surprise.  He didn’t seem heavier, but his pants have been getting a little shorter.

The new doctor, Dr. C, seems like he really knows his stuff.  There are a lot of unknowns and gray areas about gastroparesis, but Dr. C seems to be very familiar with all of the testing and treatment options.  At the same time, he’s more than willing to admit that he doesn’t have answers to some of our questions, like “is this something The Littlest Apple can outgrow?” and “what caused this?”.  And I like that he’s taking ACTION.

Overall, I’m happy with how the appointment went.  Things are HAPPENING now, and that seems so much better than just drifting from one appointment to the next, watching, waiting, and wondering.

Here’s what we’re doing for now:

NG TUBE:  Obviously this is a huge one.  We’ve been circling the drain of feeding tube options for over a year now.  The Littlest Apple is getting an NG tube in the next few days. As soon as the home health care people can get out here to give us our instructions.  He’ll be using the tube only at night, for 12 hours while he sleeps.  The drip at night is the equivalent of about an ounce an hour, or 12 ounces total.  Given that he drinks about 16 ounces of Boost during the day, 12 ounces is A LOT for him.  But broken down over 12 hours, it doesn’t sound like too much.  We’ll see how he handles this.

We have the option of keeping the tube in 24/7 or learning to put it in and pull it out ourselves each night.  Both of those options have their pros and cons.  Keeping it in during the day will mean that he’s walking around with tube taped to his face all day.  More opportunities for it to get pulled out.  And I think that would be a big issue with his Mother’s Day Out program. (The Littlest Apple had an NG tube when he was in the NICU for the first 10 days of his life….he managed to pull it out TWICE then.  I can only imagine how his 2.5 year old self will handle that.)

Only using the tube at night takes care of those issues, but then The Picky Apple and I are left to insert a tube up through The Littlest Apple’s nose and down through his esophagus every single night.  That’s a little terrifying to me.  It’s definitely going to take the two of us to hold him down to do that.  There are going to be some major tantrums, methinks.  Maybe even mine.  But I think this is the option we’re going with so that he has a little more freedom in the daytime.

NEW MEDICINE: The Littlest Apple is going to start taking domperidone along with his erythromycin.  Domperidone is not FDA approved.  Similar to the dreaded Reglan, but with less side effects, and it doesn’t cross the blood-brain barrier.  It’s been used successfully for a long time in many other countries, and is used sparingly in the US.  I need to do a little more research on this before I go get our prescription, but I think I’m ok with this one.  It also requires a trip to the compounding pharmacy, which isn’t exactly convenient.

LABWORK: The doctor ordered labwork to test The Littlest Apple’s thyroid, electrolyte balances, pancreas, allergies, a general nutritional assessment, and another celiac test.  I’m very interested to hear the results from this blood work.  We’ve done some of these tests before, but not all of them, I don’t think.  The Littlest Apple did SO good at the lab today…he didn’t cry or scream at all.

ANOTHER GASTRIC EMPTYING STUDY: This is the same as the test The Littlest Apple had in January.  Dr. C wants to do another one after The Littlest Apple has been on the new meds for a few weeks to see if they are really making any impact.

So, that’s the plan for now.  Some big changes.  Some hard changes.  Some expensive changes (we’ve already almost met our rather large deductible for the year!)  But hopefully we’ll see some results!