Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, October 04, 2015

The xray camera doesn't lie she gets to the hosital via ambulance with a bottomed-out blood pressure. Long story short she had aspiration pneumonia again!! Ok, two bouts in three months is not a good sign. It was decided we would do another upper GI and a video swallow. At least those could get done here and not have to wait until we go to Boston. These are very routine tests. 

Angela is anything but routine. 

We did the upper GI first. Angela's nissen fundoplycation is still intact. She had the open procedure done at 11 months old. Amazing, considering they usually last 7-10 years. She did have distention at the base of her esphagus, and what appeared to be her hiatial hernia having enlarged a bit from previous years, but otherwise not a bad study. 

Next was the video swallow. This did not go so well. Oh, Angela did fine for the test, but the results were very bad. First, for comparison, you need to see what a normal swallow looks like. Sorry these are a bit tedious, but its easier that trying to explain.

This is a normal swallow in an adult.
video courtesy Neinia Ferguson

Now, here is Angela's swallow of thin liquids. It is easy to see where her airway is because the barium goes into it. You can also see the barium sitting in kind of a small bowl-type area just below her airway. This is the cricoid muscle that is so tight, it doesn't let all the liquid through. 

Next they would normally go to nectar consistency liquids, but we skipped that and went straight to honey thick. Not only will you see her aspirate, but you will also see that she has some residual stuck at the back of her throat. You and I would be coughing due to the sensation. Angela gives no reaction. 

Here come the solids. You'll see her aspirate. You'll see her tuck her chin to protect her airway. You'll see the solids stick in her cricoid. You'll see A LOT of residual food sitting in her pharyngeal area. You and I would be gagging. Angela gives no reaction.

Last, we send down some honey thickened liquid to help push the solids through the cricoid. The doctor asks her to cough because there is too much residual sitting that Angela isn't reacting to and its not safe. But Angela has lived her whole life like this so it feels normal to her:

Angela was discharged labor day weekend, with an appointment scheduled to see the GI specialist just a few days out. It is clear that the Achalasia has progressed. Her swallow study is significantly worse than it was a few years ago. Not only that, but she cannot swallow *any* consistency safely, including her own saliva. The decision is made that she needs to go back to a gtube.

1 comment:

Tigger (aka Karyn) said...

I watched the videos. It makes me think because Talitha has been struggling with a chest infection for weeks and weeks now. Doctors haven't agreed with having her x-rayed but when she had her last swallow study done we could see pooling like in Angela's. I think I need to get her checked again. She also shows no signs when she should be gagging and I have had to teach her to cough and I remind her to cough when she is eating. It has become so much a part of how we operate that I forgot it is unusual. Now I am prompted to insist on an xray and to pursue another swallow study. The speech therapist just ruled out the necessity of a swallow study after watching her eat and drink but now I am rethinking everything. Her opinion was that Talitha showed no discomfort eating or drinking and didn't choke or cough but she doesn't cough unless I hear stuff gurgling in her throat and I prompt her to cough. Praying for you guys as Angela faces a huge change in her lifestyle. :(