Skip to main content

Emergency Swallow Study Today


Waiting to go back for the study...
Ella had an emergency (last minute) swallow study done today.

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.

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.

Ella with her toys from the therapist for doing such a great job :)

Comments

Post a Comment

Popular posts from this blog

Ella's Surgery Update

Ok, here's the update! Ella's surgery went really well! The surgery itself only took about an hour, but we didn't get Ella back for about 2 1/2 hours. They said she did really really well though. Ella and Daddy in pre-op Basically, they just took the hardware o ut of Ella's leg (which we were surprised by HOW MUCH was in there!) and then they also cut her old scar out (5 or 6" scar that had bubbled) and tried to sew it together so that it will heal nicely. Once we got Ella back, we had a VERY cranky girl. The anesthesia had a horrid effect on her. She cried and yelled about EVERYTHING (which is not Ella at all). It could be a cute puppy on tv and she'd scream with tears streaming down her face, "Oh, look at that cute puppy." :) Poor little thing.  Ella and Mommy in pre-op Ella and  the anesthesiologist "dressing" Ella for surgery upon request Another trial was the fact that Ella was not oxygenating very wel...
Post a Comment
Read more

The Intricate Threads of God's Tapestry

On April 16, 2018, the Lord gave me a brief glimpse at the stunning front side of the tapestry He's weaving in my life.  So many of our days here on earth are filled with our only seeing the sloppy-looking backside of the tapestry, loose strings hanging here and there, and we're left unable to imagine what kind of an image could possibly be created from such a MESS!  Of course, the perfect, completed front-side creation will only be viewable for Believers from eternity in Heaven when our Sanctification is complete, but even to catch a slight glimpse, when God allows, is utterly breathtaking! The words below, I shared on that day in April 2018, after God showed me just a tiny peek at what He had been up to during the decade since my Ella was born.  I was in the hospital, having preterm contractions while pregnant with my son, Joziah. April 16,2018 "Oh my goodness! Oh my goodness! Oh my goodness!!! Praise JESUS!  I just re-met the high risk doctor who told me...
Post a Comment
Read more

Ariana

Mostly, I post things on this blog about Ella.  It was a blog created about the book, and the majority of the book is about how Ella came to be, but in truth, it's really a story about our family, so I think it's appropriate that I share about my other adorable daughter, Ariana. Ariana is a vibrant life, to say the least.  She is passionate and dramatic about everything.  Her world is black and white, good and evil.  (which is so much like her mama)  Just to give you an idea of who this precious little person is, I'll share a few mini-stories to give you a peek into who Ariana is before sharing the real story of the day. In the grocery store, Ari will ask every person, and I do mean e.v.e.r.y person we pass if they love Jesus.  If they say that they do love Him, Ari responds with an enthusiastic, "Yay!  Then, you get to go to Heaven too!"  And if they don't, she shares the message of salvation through her colored beaded necklace and then...
Post a Comment
Read more