Losing Weight

I wish I could say I was the one losing the weight around here... but nope... Mister Owen is the one shedding the pounds. We had our three week checkup with cardiology this morning. Owen is staying steady, pulses are good, blood pressure is decent, EKG is normal, cardiac output is the same. Weight... down a pound.

Owen has always been great at gaining weight! I tube feed him 100% of his calories and the foods he eats by mouth are considered "extras". It seems like things have only changed over the last few months when Owen's weight started to taper off.

He's not exactly a small guy, weighing in at 23.5 lbs.

His daily goal is to eat 1000 calories a day. Of that 1000 calories, he should get 33 fluid ounces.

If I can work him up to tolerating the Pediasure 30 cal/ounce, then he will only need 33 ounces a day and he'd get ALL his nutrition. That is only 7 oz of formula, five times a day. We will get there... eventually.

As of now, he tolerates 5 oz of formula, five times a day. THEN, he gets a night drip of 1 oz/hour for 10 hours. This equals 35 ounces (can't believe I just used my calculator to figure that out), and he's on 24 cal formula.. .so he's still 160 calories short for the day.

I dream of not having to get up several times a night to add formula to his feeding pump. Imagine a night of uninterrupted sleep.

The other option I am looking into is pureed foods for his Gtube. This was not an option with the NG tube as it would have clogged. The Gtube opens up a wonderful world of pureed foods, injected directly into the stomach. I get excited when I think of all the healthy combinations of foods that I can blend up and give him. He'll also get a feel for having REAL food in his tummy and to learn to digest regular foods, not just formula.

If anyone has any experience, ideas or know hows on the pureed foods... EMAIL ME!!! The GI docs in Phoenix aren't on board with the pureed foods in the tube, but the docs in Tucson think it's fabulous! I'm going to talk to a nutritionist at Stanford while we're there in October and get their take on it.

Speaking of Stanford....

We leave in mid October! We're all beyond excited to go on a family vacation. I am anxious to meet with cardiology at Stanford again. I really want to know what happens next?! If his increased medications didn't seem to help his heart function, can we back down on them? When does he need another cath? There is still significant narrowing at the Glenn site ... see image below... see where the Superior vena cava is connected to the pulmonary artery? That is significantly narrowed so the blood flow to his lungs is decreased and therefore he requires more oxygen. If we went back to the cath lab and they were able to open that up a bit... perhaps he would wean off the oxygen... in a perfect world. Of course, they could open him up and fix the narrowing, but that's way too risky.

Tomorrow we have Owen's post op visit with Dr. Graziano. I am amazed at how well his Gtube is healing up. No oozy stuff, scabs, redness or blood. We expected gross. We got perfection.