Luke Update 1.28.11

Let's start with the good news.  At Luke's weight check this week he gained an impressive 12 oz. in two weeks.  So, we are almost 17 pounds, minus an ounce.

Bad news is that his weight gain has pretty much flat-lined.  The virus he got just before Christmas, combined with his less-than-stellar eating habits have put him in a precarious situation.  As our gastro doc said, "Luke is one virus away from being wiped out."  So, the other bad news is that he's pretty much quarantined through cold and flu season.  We are running through antibacterial gel and handsoap like it's candy around here.  No playdates, no Mall outings, no basketball games, nada.  Any large grouping of people and definitely any grouping of kids with germy hands is out of the question.  At Mass, I've been keeping him away from as many folks as possible and we beeline to the car as soon as it's over.  We've even traded off Masses, so he doesn't go at all.  Small price to pay, I suppose.  So, if you don't see us much or if we hustle Luke away from you, please don't take it personally.  If I wasn't a germophone before, I'm definitely one now.

Here's the real hitch...we have to get Luke gaining weight on a steady basis.  Even though he is WELL below any line on the normal or preemie growth chart, we just need to see progress.  And, that my friends, is the problem.  He hasn't progressed at all in the weight department in the last couple of months.  It's part increased activity (yea!), part totally stinky eating (boo!).

Part of my "negotiation" with our doctor this week was to try some other weight-gaining options.  Just to give you a visual, here's what we're doing:

- Boost for Kids, 1 a day, about 300 calories
- In his boost, we dissolve a packet of Duocal, about 200 calories
- He's on a daily probiotic, again mixed into a small bit of cold water that we try to get him to drink before mealtime
- A medicine, taken twice daily, to stimulate his appetite.  Side effect?  Drowsiness and dizziness
- Working with an occupational therapist to stimulate his sensory system and get him to swallow his food.
- And, we're doing our dead-level best to get him to eat table food.  It is, by far, the most stressful part of my day.

That stress and constant worry about his weight gain is what has led our doctor to recommend putting in a G-button.  For you non-medical folks out there, it's basically a tube, hooked directly to his stomach, that allows us to put liquid food directly into his belly.  So, we would try our hardest to get him to eat table food throughout the day, and then over the course of two hours (probably at bedtime) we would do a slow drip of the liquid food.

I know, it sounds just lovely, doesn't it?

Dr. B was pretty firm about wanting the button, I lobbied for two more weeks.  I just want to see what we can do.  We have a great occupational therapist who's given us some good tips.  I'm hopeful that we will see his eating habits turn the corner.

If not, though, then surgery it is.  As much as I don't want to put him back in the hands of Dr. Meyer, his surgeon, if that's what he needs, then we will do it.

Offer up some prayers for Luke's continued progress, in whatever form that may be.

St. Luke, pray for us!