NG (liquids tube) out, then back in...

On last Wednesday August 20, Maya went with Victoria back up to Boston for a follow-up barium swallowing study as well as an examination from the Ear, Nose and Throat doctor. The hope was to see significant progress with her vocal chord mobility and her ability to swallow without aspirating liquids into her lungs.

At first things seemed hopeful, as the GI team who removed her tape and saw the horrible red inflamed and flaking skin underneath wanted to provide an alternative way to get liquids to Maya. Then did a swallow study and determined that Maya could eat yogurt, applesauce and strawberries without aspiration of liquid into her lungs, but no blueberries, as these were seen to aspirate silently (no choking) into her lungs. How blueberries, which are near impossible to get anything thinner than a goo out of when squished, could possibly be worse than strawberries that squirt lots of juice with every bite, is beyond me. I wonder if the test were performed multiple times, with different foods administered in different orders, in the results would be the same.

Later that day, the ENT doctor scoped her vocal chords and concluded basically no change. Not a very hopeful sign. And also not fitting with the swallow study results which supposedly indicated some improvement. They don't want to see us again for another 4-6 weeks, so no quick improvement is occurring.

In any case, they kept the tube out and told us she should be able to get enough liquids by eating applesauce, yougurt and strawberries. It hasn't been working. She chokes often on the yogurt and applesauce and her previous heavy output of urine had nearly disappeared, and a strong hacking cough has developed, as well as a gain of 2 lbs from the 20th until yesterday. Not good - Victoria and I decided she should be back on the NG tube for proper hydration.

So today I took her to the Pediatrician's office, where the doctor heard her cough but said her chest sounds clear. Nevertheless, they sent me to get a chest x-ray done to rule out a pocket of fluid the stethoscope might not have picked up. At the same time she had no explanation for the deep cough and agreed that she should be back on an NG tube for fluid.

So then I tried to track down an alternate material for an NG tube beside her polyurethane ones that irritate her skin. I was told the only alternative is a difficult to locate "argyle" type, which the Hartford CCMC Gastroenterology office did not have, nor did they recommend due to its stiffness and discomfort factor. So I went to that office and had them reinsert a NG tube, which I did the brave daddy thing for and left the room while the nurses handled my feebly screaming daughter who also threw up during the procedure. Hellish, but the thought of her spending eight to twelve months thirsty and gaining weight like crazy was unacceptable.

Now that the tube is back in and I administered a bolus of liquid she has been happier and eating better. I just the tube is the lesser of two evils and we will experiment with different tapes to minimize her skin irritation.

To all who have been sending kind comments, we appreciate it, and keep them coming. Responses may be slow in coming however, as our household has far more going on than just the Maya medical drama, so free time to email is very low right now.