Mad? Sad? Hurt? Diappointed? Scared? All of the above. (Just being honest here.)
It's been hours now since the end of the feeding test and I'm just now calm enough to start writing about it. Why so emotional over a feeding test? Because it was the first test that's black and white.
Up until now, there's been a debate. One point of view is this: He is doing better. Afterall, he's gaining new skills (language, strength, physical skills, etc.) If he's doing better, than either God has healed him or maybe the diagnosis was wrong or both. The other point of view is this: While he is gaining some skills, these are skills he should have had all along had he been in a place that worked with him like we do. And besides, the areas where he's gaining skills are in the areas controlled by the "Grey Matter" and his diagnosis is in the "White Matter."
Today was a black and white view of if he is gaining skills, losing skill or holding his own.
We hoped and prayed that since many of his other muscles are getting seemingly stronger, that perhaps his oral muscles were too. I hung my hopes on this, that he is either holding his own or gaining strength.
The Results: Severe Dysphagia. And he is even having trouble managing his own secretions (saliva).
During the study, they put 1 ml on a spoon of water, then formula, then thickened formula. (Some kids can swallow some consistencies and not others so they tried a variety of thicknesses.) He would actually nicely swallow the bulk of whatever he was fed. Maybe 85% of it would immediately go down just like it's supposed to. His tongue and palate worked nicely. But there was this small "residual" that hung out at the back of the throat (due to weakened muscles) and when he would take a breath, it would get sucked down into his lungs and not his throat. EVERY TIME with every consistency.
And more scary, is that it's completely "silent" ... meaning you can't tell it's happening! No coughing, sputtering, no indication. He was sitting smiling, happily opening his mouth widely for MORE! This is very dangerous since these foreign foods/liquids don't belong in the lungs and could cause a major infection in his lungs ... potentially life threatening.
After the study was completed, we went to a room to chat about recommendations. While sitting there, Manny started choking. He got so choked that he actually lost his breath. (Never done that before.) The speech pathologist said he needed an immediate chest xray and left to call my Doctor for a script for it. By the time she got back, he was sleeping ... and was in mild respiratory distress. (Nostril flaring, grunting, tongue hanging out, increased respiratory rate.)
Xray showed none of the barium in his lungs ... which is good news, meaning he cleared it with some of the coughing he was doing. And the other good news is that it's not pneumonia. (Just a bad cold ... which for him is dangerous.)
So those are the facts. Why am I upset? It means that he is indeed regressing, losing skills. It's a black and white test. 4 months ago he could do things he can no longer do ... something that is controlled by the white matter. It's a reality that he is losing some skills. And that doesn't sit well with my spirit. It's devastating. I cried the whole way home from the test.
OK ... I know how I'm "supposed" to feel. It's like Dan said, "We'll just have to fight harder, pray harder." And while I'm no where near ready to "give up" ... it felt like a huge letdown. And for my Christian friends, yes I know God can still do a miracle. Still praying for it. But this is proof his healing hasn't arrived yet as we had hoped.
Their conclusions/recommendations: they of course are going to keep him on NPO status. They are not recommending doing feeding training. And they are looking at some alternative solutions for helping him manage his own secretions (lest he get pneumonia a lot more often) which includes electrostimulation.
Finally, I know most of you don't know how to respond to this. And that's OK. There's nothing that can make this all better except God. We're still in the same place we've been in since his diagnosis... God has to choose whether He is going to let him live in Heaven or on Earth.
And my Mama heart breaks.