Sunday, August 1, 2010

Everything has a Cost.

I think around the time that Patrick was a week old, one of the neonatologists said to me, quite bluntly: 'Everything we do here has a cost.' She was explaining to me that every intervention they provide in an effort to save Patrick's life also has undesireable side effects.

Prolonged mechanical ventilation, while lifesaving, actually causes lung damage.

Pain medication results in dependence on those meds.

Radiation can cause growth problems and possible secondary cancers later in life.

Steroid treatments can lower one's immunity, raise blood pressure.

Diuretics can create electrolyte imbalances.

All of those 'costs' seemed expected, unavoidable, necessary. But the one treatment I never paid much attention to was his feeding tube. Because Patrick was on a ventilator for so long, he had a nasogastric tube placed so that he could receive his feedings. Its a very skinny tube, about 20 inches long that is inserted through his nostril and is pushed all the way down into his stomach. Milk is delivered through the tube.

I love this picture.
Whatcha thinking Patrick?

I assumed that once he was taken off the ventilator he would just start drinking from a bottle.

BIG assumption as it turns out....Patrick still refuses to drink from a bottle. He barely will accept a tiny taste of pureed fruit on the tip of his tongue.

From the moment he was born, he was intubated so he never had the opportunity to suck on a bottle. He does love his pacifier -- he will suck on that thing for hours! -- but he does not have the coordination to suck-swallow-breathe. Its essential for bottle feeding, and he doesn't have it.

He is tube-dependent. Because we feed him through the tube six times a day, with each feeding taking over 90 minutes, he is never really hungry. He has no drive to eat, to satiate.

When I put a bottle in his mouth, he usually just gives me a big, wide happy smile... and all the milk runs out of his mouth, down his chin. His tongue flip flops all over the place. He is totally disorganized.

IF -- and that's a big IF -- any milk happens to find its way to the back of his throat, the poor little guy gags, panics and usually throws up. I feel so bad for him. We've tried every kind of bottle imaginable. Nothing works.

We've also been trying small amounts of Stage 1 fruit. He will take a tiny tiny amount on the tip of tongue, flip flop it around and eventually swallow some. But a teaspoon could take 30 minutes or more.

So tomorrow we are taking him to a Feeding Specialist. She is a Speech/Language therapist, specializing in oral/motor feeding therapy. The therapist comes highly recommended from our pediatrician as well as from a few nurses at Yale. I am praying that she can offer some help to Patrick.

I'll keep you posted!

No comments:

Post a Comment