Swallow study results

Today was Hannah’s 5th swallow study.  The first three swallow studies she had passed.  The fourth one, which was done just 2 weeks after being trached, she failed.  Because the choreathetoid movements were so involved and intense, she had no suck or swallow capability.

We were hoping that since she has regained her suck, and she was tolerating stage 2 baby foods fine (where she wasn’t on that fourth study) that she would pass.  

As soon as Hannah got in the feeding chair, she had a meltdown.  We continued with the test, but she was so stressed out that she wouldn’t even try sucking or swallowing.  The ENT and speech pathologist were able to get some data though as gravity helped get the different barium textures into her throat.

Hannah aspirated on the nectar-like liquids (meaning it went into her lungs instead of her esophagus).  It was easily apparent watching the xray study next to me as I was trying to comfort Hannah in the chair.  We didn’t even bother trying thinner liquids because this result just shows she can’t swallow liquids at this point.

It seemed like Hannah aspirated on the pudding type foods (like stage 2), but the truth is that it was really inconclusive because Hannah was not even trying to swallow it.  She was doing her silent tantruming (she never had a vocal cry, hence the breath-holding spells), and she just let it sit in her mouth.  There was no aspiration, but there was attempt at penetration of the pudding into her lungs.  But her body redirected it.

The speech pathologist said that if it wasn’t for Hannah’s obvious non-participation in the study that all ‘by mouth’ foods and drink would be off limits.  But because we have had success with pudding-type foods like stage 2 without aspiration into her HME that we can continue with that on a very sparing basis.   I wouldn’t say she would be nervous about aspiration of these types of foods, but her comment was to “just do it for taste and oral pleasure not for a meal.”   Which in all honesty, that is what we do now.  During non-trachiitis days, she would only take a few spoonfuls to maybe one jar of stage 2 a day.

We will try again in 6 months.  Hopefully we will get the trach out and better manage her chorea movements with medication.  I doubt her participation will be any better because she is so over docs and procedures that even stepping into a medical-type room just upsets her.