Thursday, April 5, 2007

Chylothorax lesson

Hi everybody,

Well, Harlie is doing much better, I think. She was so active today, moving her arms and legs all over the place. She is such a little charmer, flirting with anyone that gives her a glance. It has been really funny to watch. She has had a lot of repeat nurses and they tell me that they are requesting her - which completely warms my heart!!

They weighed and measured her today. On March 5th – exactly one month ago today, she weighed 11 pounds, 1 ounce at her pre-op appointment. So far, she has been gaining about 1 pound a month. Today she weighed 12 pounds, 1 ounce!!! I am so pleased! She still gained 1 pound, despite the fact that she has spent 3 weeks out of the past month in the hospital AND had major open heart surgery!!!

As far as a medical update goes…I got my lesson on chylothorax (chyle) today. Here goes:

There are long chain, medium chain and short chain fatty acids. The long chain fatty acids travel up your lymphatic system to a vessel near the heart and get dumped into the bloodstream. Most likely, during her heart surgery, that tiny vessel (about the size of a strand of hair) was nicked and damaged. This allowed the fat to leak into her chest cavity instead of into her bloodstream.

What that means is that as her lungs were trying to inflate with her breaths, they were fighting the fluid IN the chest cavity, surrounding her lungs, making breathing more and more difficult. And, since she doesn't have adequate lungs anyway, she has no reserve. Her lungs are fighting an uphill battle.

So, we will give her formula made of medium chain fatty acids (Portagen – special order through a pharmacy).

The medium chain fatty acids are absorbed into the body differently, bypassing that damaged vessel. So, that way the vessel will not leak, giving it time to heal on its own. Hopefully in 3 months, when we re-introduce regular formula, we will see no build up of fluid in her chest cavity and then we will know that it has repaired.

Until then, we watch closely and if too much fluid builds up again, then they will drain it again. If that continues to happen, they will surgically insert a chest tube that has a little suction to it, to help get the fluid out - 24/7. If that happens, we can't leave until they pull the chest tube out.

They are thinking that she has a combination of viral pneumonia and chylothorax. Hopefully now we are well on our way to recovery. Of course, this hospital stay has put a kink in our surgery plans for the future. So, everything will be delayed a bit. They want 6-8 weeks from RECOVERED to her next surgery. And frankly, I’ll need the break, too!

Well, that’s about it for today. Thanks for your support and prayers!!!

Take care,
Christy

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