Crazy Heart Mama

I took Colman to see a nutritionist this past Tuesday. I’ve been writing down every last morsel of anything and everything Colman is putting in his mouth, so I took those notes with me to the appointment. It looks like Colman is eating the amount of calories he should be eating, which is between 1100 to 1300 calories per day. The nutritionist thought that I was doing everything right and suggested that we try to bump up his calorie intake 1300 to 1500 calories per day by switching him from two percent milk to whole milk and adding a couple of pieces of bacon to his breakfast every morning.

I wasn’t impressed.

We saw Dr. Rhame last week and I had him check Colman’s height from his well checkup on May 18 of 2012 and it showed that he’s grown three-quarters of an inch.  To stay on the fifth percentile growth curve, he should have grown another half an inch. Colman’s now dropped into the second percentile in height and weight.

The real reason I took Colman to see Dr. Rhame is he had a touch of a cough and I was sure that it was because he had an effusion of fat leaking into his chest because of all the high-calorie, high-fat food I’ve been shoveling into him. No one was ever able to really explain why Colman’s pleural effusions turned chylous last year, so I’ve been worrying about phantom fat leaking into his chest. Although, Dr. Rhame had a theory that I think fits: Maybe they hit some lymph when they placed the drain for the effusions and that caused the fat to leak. Because the fluid that was tested first had no fat in it.  The fluid they tested a day later showed fat.

I kept asking everyone over and over at TCH: How could he have a chylous effusion when he hasn’t had surgery? Usually, you get a chylous effusion when the lymph is cut and the fat leaks out. And everyone just kind of shrugged their shoulders and blamed it on his leaky tricuspid valve. The fat that was leaking is the reason we were first put on a fat-free diet and then changed to the low-fat diet. One of his doctors said he didn’t know if he’d ever be able to transition to a regular diet because of the leaky tricupsid valve. So you can see why I’ve been wiggy over this unexplained fat leakage, but what Dr. Rhame said makes total sense. He’s clearly a genius.

Colman had another appointment at the Hem/Onc Clinic at CHOSA on Thursday. They always do a height and weight check every month, so I asked for Colman’s chart so I could see what his height was six months ago. His weight was down again at this appointment on Thursday to 38.8 pounds.

(Just think of Edvard Munch’s “The Scream” painting and you’ll know how I feel every time he drops weight.)

As far as his height goes, Colman’s first visit in November they measured his height at 119.5 cm. Here’s where it gets a little comical. No one measured him the same after that. His measurement on Thursday was 118.9 cm. One time they had 118 cm. Obviously, I know he’s not shrinking. I’m not worried about that. But nowhere in his chart is he over 119.5 cm, which means that he hasn’t grown in six months AT ALL. That has me worried.

So I sent an email to Corey, the Cardiomyopathy Coordinator, at TCH explaining what was going on. She replied that she would have one of the dietitians who works with the heart kids call me back because there’s got to be a better way of getting more calories into his diet than a couple of pieces of bacon.

Clearly, she wasn’t impressed with the nutritionist’s suggestions either.

At this point, I really just need some magic. Give me some essence of unicorn oil or powder that I can sprinkle on Colman’s food that makes everything taste like freshly-spun cotton candy, please, and adds 500 nutritious calories a day. Because offering snacks all the time and spiking his chocolate milkshakes with whey protein is wearing me out. Especially when he’s not gaining weight. He’s only losing it.