Back To Square One...

As of 9/11/09:

We had thought that we were done with the NG tube as Ethan managed to put down a whole bottle several times (albiet - it was tough slogging). However, for breathing issues, we brought Ethan in to Children's and what started as a routine visit became a 48 hour stay. And the NG tube was here to stay...
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(Again, gleaned from status emails)
Ethan has always been (from birth) a noisy breather. However, in the last week, it has gotten much worse. We finally called it in and we were advised to bring him to Children's to have them look at it. Since it occurred the most during feedings, they wanted OTPT (occupational/physical therapy) to look at him in regards to his feeding/swallowing. After that initial look, they decided to have cranialfacial have a look as they didn't think it had anything to do with his swallowing but more of an airway blockage. After examining him some more, they recommended admitting him to Children's for observation. (So what began as a 1-2 hour visit turned into a 9 hour visit for me, and a 48 hour visit for Dina).

After 48 hours, and trying various things, they discharged him. They changed his sleeping arrangements/positioning as well as made more amendments to his feeding plan.

Ethan now sleeps on a modified wedge/sling (I can't remember the exact name of this thing). He sleeps face down on the wedge (head up towards the top) in a sling attached to the wedge to prevent him from sliding/rolling down the wedge and to help keep him prone (face down).

Last week was also the first week that Ethan failed to gain any weight. The doctors at Children's speculate that he does have an airway obstruction - his tongue. When laying on his back, it seems to obstruct his breathing. This accounts not only for the (very) noisy sleeping but in his difficulty in eating. They speculate that he expends so much energy trying to breath (especially during feeding) that all his caloric intake goes towards trying to breathe and eat.



Hence, we have changed his sleeping position to a prone one allowing him to breathe with much more ease (he is at times almost silent now - he has *never* been silent). Eating is slightly different. If a feeding is going well, it is capped at 30 minutes and the rest (if any is left) is tube fed. If a feeding is going very poorly, it is simply aborted and we will tube feed him for that feeding. His caloric intake per feeding was also bumped up. He is also on antacids for reflux. Contrary to our hopes, the feeding tube will remain for quite some time now.

The goal is to make breathing and eating easier for him so that he can put on weight and hopefully simply outgrow his airway problem. Since he will not be capable of significant movement until 3-4 months (that's when infants normally start to be able to roll over) we buy a few months of time to allow for significant weight gain and for him to gain strength. When he does start to move more (i.e. 3-4 months from now), the air way problem may go away, or may resurface, or something else may happen. The doctors cannot say what will happen. All that is known at this point is that these fixes seem to work and will at least buy more time before anything else needs to be done (if at all).

-bob