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| Waiting to go back for the study... |
They sat her in a special chair and video x-rayed as she ate different foods and drank several drinks of different consistencies. Their concern is that Ella has been aspirating and causing her this wheezing and these breathing problems she's experienced for the past several months.
Turns out, Ella aspirated on several of the thin liquids during the study. She even took fluid into her lungs with the thickened liquids. And more fluid went in with the double-thickened liquid. It wasn't until the fluid was thickened 3 x that she did not aspirate. What's more concerning is that every time she aspirated (or took fluid into her airways) she NEVER once coughed. When I asked the therapist if that was because she was so used to aspirating, she said that I had hit the nail on the head.
So it appears that Ella has been taking fluid into her lungs for quite some time now. We will thicken her liquids now to a honey thickness so that she won't aspirate for the time being. They are ordering her a special sippy-cup that will help her monitor portions of sips. She has had this swallowing disorder since 2009 (or maybe even before) but we thought it had resolved (because the coughing stopped for the most-part), so now she will do swallow therapy that will hopefully help her develop the necessary muscles to help her swallow correctly.
My mama heart was pretty heavy today. The liquid that Ella has been taking into her lungs has most likely been one of the major causes of her wheezing, pneumonia, asthma, etc... and I didn't catch it. I know the evil one wants me to feel guilt over this and I am trying my very best to lay it at Jesus' feet and accept His grace, but it has been hard to know that she's been taking liquid into her lungs for so long that she doesn't even sense the need to cough anymore.
Ella's amazing doctors down in Salt Lake at the Primary Children's Hospital along with her pediatrician here have worked together in trying to find out what's going on with Ella's airways/lungs and brought us to this point of getting the immediate swallow study. She will also be seeing a pulmonologist in a week and a half who will join forces with the other two in trying to solve this mystery completely.
Ella has already been scoped (had a long, stringy camera strung down her throat to see what the "damage" is in her airways) which found that she has severe acid reflux and has been put on a very high, very regimented schedule of medications, but the ENT would still like to probe further past her vocal chords and see if there's narrowing in her lower airways from when she was intubated (on lifesupport) at birth, which would also cause Croup and other breathing issues. It seems Ella is having both upper AND lower respiratory issues, so we just appreciate any and all the prayer we can get over this precious little girl of ours. God has already given her the strength to fight for life and endure...AND enjoy, even in the midst of great discomfort.
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| Here's Ella in her special x-ray chair about to start the study |
Today was neat in a way because Ella had all the nurses and aides gathered around her in adoration. They told me that kids never tolerate the swallow study very well and get really fussy. They also informed me that the stuff Ella was guzzling on command was very gross and the kids spit it out or refuse it, but Ella did it with pleasure! They all giggled and ooohed and aaahed at Ella's antics. What a perfect picture of God's strength displayed through one of His children!
Now, we are just praying for answers so that we can properly treat this sweet little gal of ours.
Thanks so much for taking the time to read and for supporting our family and Ella in prayer.
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| Ella with her toys from the therapist for doing such a great job :) |
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