Monday, April 4, 2016

The Return of Ellie Bellie Bear : Updates all around

Two months!  Yes, I have been gone for 2 months, but that is because we have been busy.  Both a good busy and a crazy busy!

I'll start off with Ellie is doing very well. Since Bear had her airway surgery back in November for sleep apnea (lingual tonsillectomy and glossectomy), we have seen progress in various areas of development.   We believe that is because her sleep quality has improved because prior to her surgery, Ellie maintaining oxygen saturations at 80% while sleeping.  Normal is 98-100%.  This means that her brain was not getting enough oxygen, which obviously leads to several health issues.

Since her surgery, Ellie has gained nearly 2 lbs and has grown in height!  Happy dance!  Her sleep pulmologist theorized that part of Ellie's failure-to-thrive was related to her apnea.  Unfortunately, she is still quite underweight each pound is a battle - to  gain and maintain - as her GI issues also play a role.



This brings me to speech!  I kid you not, remove the lingual tonsils, de-bulk her tongue and Poof!  the child is trying to formulate more words.  This child is cursing like a sailor.  Yep, she takes after me.  I knew I should have curbed my cussing around her!

A typical Ellie conversation: (please note that the Bear does not know how to modulate her voice so it is all practically shouting)

Ellie: F*ck!  F*ck!  F*CK!
Me: You want to ride in the TRUCK?
Ellie:  F*ck *ss! [Truck Yes]

In a restaurant:
Ellie: F*ck F*ck F*ck
Me: What?!  What?!  I see no truck.
Ellie: F*ck (signs fork)
Me: Oh you want a FORK!
Ellie: *ss

I'd love to tell you all that I am embarrassed by her crud words, but really, I struggle not to laugh.  It is funny. She is trying so very hard and I am proud of her.  I just loudly repeat back what she is trying to say so that the people around me recognize that my kiddo is really a "polite little angle". *snort*




GI Issues / Upper Endoscopy Results:

Well goodness, I left you all hanging with the upper endoscopy and ruling out celiacs and whatnot.  You know how you go in expecting to find something, but instead come across something different?  That is Ellie.

The gastroenterologist took 7 biopsies from Ellie's upper GI tract - esophagus, stomach, duodenum (upper portion of the small intestine).  Celiac's disease, lactose intolerance, and H. pylori were all officially ruled out.  He did, however, find marked inflammation of the esophagus and stomach.  He has no explanation for this other than perhaps it is lingering gastritis from a prior infection or maybe a side effect one of her medications.

Here's my thought - July 2014, Ellie stopped eating.  Just stopped.  She was taking in approximately 300 calories a day.  She would get a bit better and then her appetite would disappear.  In July of this past year, we started her on Periactin, which is an antihistamine that also works as an appetite stimulant.  Fun Fact: antihistamines decrease the release of histamine.  Histamine regulates the release of gastric juice.  As a result, antihistamines (such as benadryl, Periactin, Zyrtec) can help with nausea.

Anyway, my thought is that The Bear's esophageo-gastritis started back in July 2014.  That her inflammation was so bad that it hurt to eat. So, she basically stopped and then lost a lot of weight.  Nonetheless, she is on Protonix, a proton pump inhibitor, which is used to treat reflux and ulcers.  This will allow her stomach and esophagus to heal.  She has just one more month on the Protonix and then we shall see how does.  We have several GI appointments coming up with 2 different doctors as Ellie is still battling severe constipation and we have plans to do more extensive testing come June.




Semi-related to GI, for the past 5 days, Ellie has been peeing 2-3 x day.  This is a marked improvement over her peeing every 24 hours.  Like her urologist, I do believe the constipation does contribute to the urinary retention.  Yet, I do wonder if some of her medications also play a role.  Nonetheless, I am hoping that we can start working on potty training soon because it is time to say good-bye to pull-ups!




Back to sleep - yeah, I know.  I already waxed and waned about the sleep.  Sleep is so important and if Ellie isn't sleeping, no one is sleeping!  Bear decided to return to her old habits of early awakenings for most of late December into February. This was the whole waking up at 2:00am and partying until 7pm that night.  Do you know what sleep deprivation does to a child?  It is like ADHD on steroids.  It is as though I never gave her the Adderall.  She is wild, impulsive, inattentive, and irritable!  There were several phone calls to the sleep pulmonologist and a visit in there as well.  We finally seem to have a handle on her sleep, which has made a world of difference.



Fun Stuff:

Spring Break was a grand ole merry party.  First up, Ellie had a repeat sleep study.  Because we know how to have a great time on spring break!  Her sleep pulmonologist and airway ENT want to see how things are going after her surgery.  Ellie was a rockstar! Oh yes, she fought us tooth and nail with each electrode being placed, but she was able to calm herself down in between.  She also SLEPT!  We do not have the results yet, but I am feeling pretty positive.  Yikes!  I hope that I didn't just jinx everything!



Aside from all these fun medical things going on, Ellie has been enjoying her weekly horse therapy sessions.  She is getting better at guiding her horse using the reigns and saying words.  She had a dance recital last month and actually danced.  She did not run off stage.  She did not try to crowd surf.  She did not try to break dance like last year!  Ellie went with her kindergarten class to the children's museum and did great - meaning she didn't run away from her aides and she played nicely with her classmates.  All in all, even with all of the medical issues that the Bear is experiencing, she is thriving and happy!



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Monday, February 1, 2016

Upper Endoscopy - some answers and some questions

I wanted to give a quick little update as Bear had her upper endoscopy on Friday.  I hear you all snickering about the "quick" part because I am not exactly known for my brevity.



Upper GI or upper endoscopy or an esophagogastroduodenoscopy:  Whatever you want to call it involves inserting a lighted tube through the mouth, down the esophagus, and into the stomach and duodenum.  The duodenum is the upper 3rd of the small intestine.  This tube has camera that essentially allows the doc to see the insides of your upper gastrointestinal tract to look for reflux, ulcers, tumors, etc. and allows for biopsies.



Bear actually had one back in August of 2011 because she was Little Miss Spits A Lot with her reflux projectile vomiting.  Funny thing, is that after she got the endoscopy, she stopped spitting up.  It was as though the test cured the reflux.  We couldn't completely 100% rule out celiac based off of this upper GI because she has barely started to consume gluten after testing out of an oat allergy (yes, a random oat anaphylactic allergy).  Oats are often grown next to wheat or manufactured in the same plants as wheat, which is why we pretty much stuck to rice.

There are two main differences between the endoscopy results from 2011 and this past Friday.  The one from 2011 showed a beautifully pink and normal upper GI tract.  The one from Friday did not.

Bear's esophagus was beautiful. No signs of reflux or anything exciting like that.  Her stomach, however, is quite angry.  Red.  Inflamed.  Basically, she has gastritis.  The GI doc did a rapid test for H pylori, which is a type of bacteria that causes ulcers.  It was negative.  He will send a sample to the lab to do a more conclusive test.  There is also the possibility that one or some of her medications are causing the gastritis.  Or it may be something else.  The upper part of her duodenum is also not very happy with marked pockets of inflammation aka duodenitis.  This could be from leaking stomach acid into the small intestine, an autoimmune disorder such as celiac disease, lactose intolerance, or some other inflammatory process. The lower portion of the duodenum appears normal.

Upper GI of esophagus through duodenum (upper part of small intestine):
all areas pale pink with no signs of ulceration or inflammation.

Upper GI: Abnormal (I apologize for poor quality)
Note the redness in the 2 views of the stomach as well as a small ulceration in the upper duodenum.
The yellow is bile , which is a normal finding.

Seven tissue biopsies were taken and have been sent to the lab.  It will be 1-2 weeks before we know the results.  Based off those results, we will have a clearer idea as to what is causing the inflammation, what other tests need to be run, and a treatment plan.  Interestingly, it may have nothing to do with her constipation issues, but probably has had a significant impact on her poor appetite and her poor weight gain even with the appetites stimulant..  It is a lot of wait and see.  In the meantime, we are going to start her on Protonix, a proton pump inhibitor similar to prilosec ,which well help decrease stomach acid production and allow her stomach to heal.

To say that I am stressed out is an understatement.  I really thought everything was going to come back normal. How long has this been going on?  Why didn't the GI doc agree do the scope earlier?  How could I not know that my daughter was/is in pain?!  Oh how I wish Ellie was able to communicate and tell me what hurts and bothers her!



Ellie Bear vs. the OR:
We were fortunate that Ellie was able to have her procedure at the outpatient day surgery center rather than in the hospital OR.  It was a much more pleasant experience for the most part.  Well, as pleasant as a surgical center can be. She did great in the waiting room, but then lost it when we got pulled back into pre-op.  She saw those hospital beds and knew what was coming.  This was  her 3rd time under anesthesia in the past 5 months so she remembered how cruddy she feels afterwards.  She calmed down with the help of her iPad, a fresh coloring book with color wonder markers, and a new book . . .  until the surgeon, charge nurse, and anesthesiologist showed up, which is when she displayed her super human Bearity Bear strength and shenanigans.  Ellie gave us a little trouble coming out of anesthesia.  Probably because she wanted some beauty sleep, but as soon as she was up, she was wild!  Girlfriend is a cranky pants, combative little toot post-surgery.  She screamed the entire way home and continued to be agitated even after she ate 3 chocolate frosted donuts.  A few hours later, she was back to her usual perky, spunky self.


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Thursday, January 21, 2016

GI Situation, Foreign Body, Failure to Thrive


*Part 1: written on 12/27/2015

While several children with Down syndrome are more likely to have some constipation due to their low muscle tone, Ellie's extreme gastroinstestinal issues are not related to her sporting an extra 21st chromosome.



Ellie has something called moderate - severe delayed colonic transit.  Something that was confirmed last year via Sitzmaker study.  What this means is that the stool moves very very slowly through her small and large intestines.  Due to the sluggish nature, this allows for more and more water to be pulled out of the stool and reabsorbed into the intestinal walls.  What this means is her poop becomes hard a rock moves even slower.  This is something that cannot be measured by dietary measures along such a increased fiber, prune juice, increase in fluids, coconut oil, or diet high in magnesium  Diet is a part of her bowel regime, but she also on 2 daily osmotic laxatives (these are laxatives that push water into the stool).  She is on a stimulant laxative (Senna) two weeks on and two weeks off and that helps with intestinal movement.  She cannot take the Senna Lax all the time because as a stimulant laxative, the bowel can become dependent on it.  For the past few months, we have increased our use of enemas.  I am not pleased.  Andrew and I refuse to get into a situation where it is 9-10 days without pooping and necessitating a hospitalization.  For that reason, if she doesn't go within 5 days or we see her stop eating/drinking,  she gets 3 enemas - one for 3 consecutive days.  The reason for this is because the first day nothing happens.  The saline just comes out 20 minutes later.  The second day may produce something or it may not.  Day 3 works!



Why am I telling you all of this?  Well just before Christmas, we narrowly avoided a hospitalization.  Doesn't everyone want to spend Christmas week in the hospital?  After Ellie's surgery around Thanksgiving, we knew there would be trouble.  Narcotic pain meds actually cause constipation.  Ellie was on them for 4 days.  I had the unrealistic hope that her antibiotic would counteract the GI side effects or Lortab, but we were wrong.  Since then, we have not been able to get a handle on things.  The enemas were only producing small amounts of poop and she was bloated.  I finally put the call into GI.  They wanted to obtain an abdominal x-ray to determine her fecal load.  Okay, I think that is funny "fecal load".  Sorry, it is juvenile of me, but one has to have a bit of humor in times like these!

The x-ray was interesting. . .

x-ray tech: Did Ellie ever have some kind of GI surgery?
Me: no
x-ray tech: Like something with clips or clamps?
Me: no
x-ray tech: what about bladder or ureter surgery?
Me: No.  Better let me take a look.

Now, not that I am exactly an expert at reading X-rays or anything, but I can tell a foreign body when I see one. . . and tons of POOP!

This x-ray is a bit reversed in that sold objects and bone should appear white while air /gas should appear black.
Note all the gas and large amount of fecal content throughout the entire colon pushing up on her diaphragm.
Red Arrow = foreign body in the pelvic region


As it turns out, the GI specialist didn't give a flying rat's patootie about the foreign body.  "Oh that will just be pooped out" only, my child doesn't poop!  That is the problem here.

Here was his big plan: an at home, 3 day cleanse.  If she didn't expel a substantial amount of stool by that Monday, she would be admitted to the hospital.  The cleanse was going to involve continuing the above medications while adding in 3 days of Milk of Magnesia, 3 days of fleets enemas, and a Magnesium Citrate.

Magnesium Citrate is nasty as all get out.  It is fizzy, but not like soda fizz.  Think more along the lines of pouring vinegar on baking soda fizz.  Only it tastes like liquid fizzy chalk with some flavoring - citrus, cherry, or grape.  Now they will go on about serving it very cold and adding in crystal lite or Mio drops and what not.  They are delusional.  I gag and vomit with just a few sips so imagine my developmentally delayed 6 year old having to drink 1/2 bottle.  Riiiigggghhhhttt.



Needless today I busted out laughing on the phone and told them that it wasn't going to happen, but I would add in the MOM and do the enemas.

--------

Well, I needed to eat my words. She did poop is out.  The next day.  It was one of those erasers that you put on top of a pencil.  My guess is she used her teeth to pull it off the pencil and swallowed it by accident.

She had a yellow one of these bad boys.
How she didn't choke when it went down surprised me.
It happened at school.  She is an eraser thief.


That cleanse seemed to work because she wouldn't stop pooping.  . .  until she reverted back to her old ways.  We had to repeat an enema on New Years Eve (we totally know how to ring in the New Year) and start this new medication called Amitiza.  It seems to be working!  We are continuing with the Miralax and have cut the lactulose down to once a day.  She is eating a bit more than usual too. This is exciting!

--------

*Update: 1/21/2016
I spoke too soon.  She hasn't gone in over 4 days.  I know 4 days doesn't sound like a huge deal, but this is kind of how things go.  She does great for 3-7 days and then suddenly nothing. Nada. Zip.  Her appetite isn't horrible, but it is less than it was last week.  We saw her GI doctor today.  Apparently, she may be one of those kids what will require weekly enemas for life.  I am not accepting this.



A few things from today's visit:
1. Ellie has gained 2 lbs!!!!  She has also gotten a bit taller which I knew about last month when some of her pants got too short.  TWO POUNDS!!!  She is slowly getting back to wear she was ~ 2 years ago.  Soon to be a Chunky Chicken again!
2. I convinced the doctor that Magnesium Citrate is nasty.  That he needs to go and try it himself so he can realize just how much he is asking of his patients.
3. The doc finally realizes that her constipation is out of control and that it is time to do more tests.  If she has something like Celiac's, her gut will be inflamed and damaged.
4. Next Friday, Ellie Bear is getting an upper endoscopy to rule out celiacs once an for all.  This is where they take a small noodle-like scope through the nose - esophagus- stomach- duodenum (upper portion of small intestine).  It allows the doc to look at all the mucosa to see if there are ulcers, reflux, inflammation, polyps, etc and to also take biopsies.
5.  If she has celiacs disease, she will be going gluten free.  If not, then she is going to see her other GI doc who specializes in motility disorders and will have a colonic manometry.  I'll spare you the details for now, but it is similar to the anorectal manonmetry she had 18 months ago to rule out Hirschsprung's Disease.

Photo: ramsayhealth.co.uk


All in all, I am glad that we are finally trying to get to the bottom of the GI issues.  For so long, I have felt like the GI specialists were focused more on treating the constipation rather than trying to discover the reason behind it.  Hopefully, I won't take forever to give you all an update after next week's procedure.  I have been dealing with some health issues these past several months, which sadly means the blog has taken a back seat. I have a Christmas post that I still need to publish!



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Tuesday, December 8, 2015

Ellie's Surgery for Sleep Apnea and Recovery

The month of November sped by while at the same time it, seemed to crawl along at a snail's pace.  There were too many things to worry about and I do not mean of the turkey being over-cooked  and a family feud variety.   No, I am talking about Ellie's surgery and my cervical steroid injection procedure.

As someone with a diagnosed anxiety disorder, it wasn't very difficult for the usual worrying and feelings of anxiousness to transcend into full blown panic mode complete with heart palpitations, nausea, sweating, and feeling of impending doom.  Then how the irrational suddenly becomes the rational.

Check out the two missing bottom teeth!
Dancing to The Wiggles "Do the Monkey" song during 2dance2dream


In the past year, I have had several steroid injections into my back.  Nearly all of them have been in the lumbar (lower) region of my spine as well as my sacroiliac joint.  However, it was the first time I was having a shot into the epidural disc space a my neck in hopes of alleviating the intense neck/should pain with radiating numbness, tingling, and weakness down my entire left arm.  Epidural shots into the cervical region, as opposed to lumbar or thoracic, are a bit more risky given the close proximity of the brain as well as narrowness of the spinal column.  This of course triggered an intense sense of doom.  "It is going to cause a flare up that lasts through Thanksgiving and then I will have to cancel Ellie's surgery.  I am going to have temporary paralysis or a spinal headache!"



Then even more worrisome for me because it involve my baby, Ellie's surgery - the lingual tonsillectomy and glossectomy- which was going to commence exactly one week after my injection.  By the Friday before Monday's procedure, I had talked myself into believing that because I worried, fretted, and had horrid dreams about all the "what ifs"related to all that could go wrong with Bear's surgery and recovery, that I worried all possible complications away.  Of course, then I had myself thinking "well now I just jinxed it and something is going to go horribly wrong!"

As with most things, I worried for nothing.  My shot was awesome with a minimal flare up followed by 50% pain relief and 75% decreased numbness/tingling.  Ellie's procedure went well and she had a relatively smooth recovery.

Pre-operative waiting room Selfies

Ellie's surgery lasted approximately 1.5 hours and she was a little stinker pants coming out of anesthesia.  Then for the next two hours she was agitated and screaming bloody murder.  Kicking, hitting and using her teeth to pull off the sock that was taped around her ankle.  The sock that was covering her pulse oximetry monitor around her toe - the little thing that measures the oxygen saturations in the blood (normal is 98-100%).  Given the thrashing that was already making it difficult of the pulse ox monitor to function proper, I respectfully asked if we could do spot checks every x number of hours rather than continuous monitoring and the doc looked weary.  I totally understand seeing as the child just had her upper airway carved on!  Yet, after spending just 5 minutes in the room with the Tasmanian Devil, the doc said "take it off and check her every 4 hours".


Once Ellie was calmed down using coloring books and watching Sofia the First, she ate some ice cream and drank a bit of juice.  She also started peeing!  As in she peed THREE times that day and 3 times the following day. This is something that we hadn't seen since July (yes, she is still doing that pee every 22-30 hour thing).  When we arrived in pre-op, Ellie hadn't urinated in well over 24 hours.  I knew from past experience that the anesthesia would cause a more acute urinary retention so I convinced the surgical team to perform a urinary cauterization in the OR if she didn't pee while under.  That cath seemed to be a cure . . . for about 3 days.

Busting out!  Poor thing was feeling pretty cruddy, but she was happy
to be headed home after a night in the hospital.

I was extremely concerned about how things were going to go overnight- would she require oxygen since she is so swollen?  Would she be in a lot of pain?  Would she sleep at all?  Again, it was needless worry for our Bearity Bear had oxygen saturations from 91-94% for the entire night!!!  To me, that is proof that her surgery was a success because pre-surgery, she would sit at 81% for most of the night.

Play-doh pajama time with Daddy!  Her cheeks were pretty swollen.


A traditional tonsil and adenoidectomy recovery usually takes 7-10 days with an increase of pain around day 5-10 depending on when the scabs slough off (it was day 6 for Ellie a few years ago).  With the lingual tonsils, there is less raw space and as such, less pain.  The surgeon stated that normal recover for a lingual tonsillectomy is 5-7 days.  Ellie's recovery took about 6 days with her returning to school the following Monday.  I would say that post-op day 3 (Thanksgiving day, of course) was by far the worst where we had a hard time controlling her pain and that left her miserable, crying and rather agitated.  As for the glossectomy, the tongue heals quickly - in a manner of 4-5 days.  It did give her some seriously rank breath that lasted nearly 2 weeks - as in enough to pass out from if she were to breath on you!  She is still snoring a bit, but I believe that is because she has some drainage and congestion due to her throat and tongue healing.  We will have a follow-up sleep study in about 3 months to re-evaluate her sleep apnea.




So that was our November and now I can hardly believe that December is already here and soon 2016!


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Thursday, October 29, 2015

Obstructive Sleep Apnea - surgical management in children; lingual tonsillectomy, glossectomy

When I first started working as a nurse practitioner, I took a position at a busy, urban pediatric ENT clinic.  I used to spend my days in pre-/post-op appointments and teaching parents about various ear, nose, and throat surgeries.  Now, I am the on the other side, the parent side. It is a weird feeling.  On one hand, I feel more prepared than ever given my background.  On the other hand,  it is a great source of stress to know all the details of the various ENT procedures / anatomy related to my daughter's ears and airway issues.  Sometimes, it just means more to needlessly worry about and get fixated on.

Today, we finally had our appointment with an ENT specialist who works specifically with children who have Down syndrome and sleep apnea.  She is amazing and very knowledgeable.  I know that Ellie is in safe hands.


Rather excited about the horse picture in the waiting room
Note: I took a quick pic first and then told her no feet on the chair - priorities

Background:
Ellie was diagnosed with Obstructive Sleep Apnea via a sleep study aka polysomnography back in January.  Essentially, Ellie would have pauses [apnea] in her breathing while asleep.  Even more worrisome is that she has very slow, very shallow breathing. This means she isn't taking in adequate oxygen to feed her brain and that she isn't exhaling enough carbon dioxide. [hypopnea] Her oxygen saturation would sit in the low 80s for most of the night.  Normal oxygen saturation are 97-100%.  This is a toxic situation that leads to behavior issues, frequent night wakings, and possibly even be part of her failure to thrive.

Photo from Ellie's sleep study.  
Health Risks related to sleep apnea
Photo: www.sleepapneadisorder.info


In most cases of sleep apnea, the child's tonsils and adenoid are removed.  These fatty tissues can be the source of airway obstruction.  By removing the tonsils and adenoid, you are keeping the upper airway open.  Ellie had both of hers removed 2.5 years ago.  It actually resolved her sinus infections and eliminated the need for further sets of ear tubes because the adenoid was so large, it was blocking drainage from the sinuses and Eustachian tubes (a part of the ear).

Beauty Sleep: Tonsils, Adenoid, and Ear Tubes - obstructive sleep apnea and chronic sinusitis


CPAP:
Because we already performed an tonsillectomy and adenoidectomy, we opted to treat Ellie's sleep apnea and hypopnea with sometime called a continuous positive airway pressure device aka CPAP.  It was quite the trial.  Getting Ellie to put on the mask let alone hook it up to the machine and turn it on, was a nightmare.  Social stories.  Pictures.  Bribery with M&Ms. Enlisting the help of therapists and a sleep mask technician.  None resulted in Ellie donning on the mask for more than a few minutes.

As you can see, Ellie was not a happy camper.

CPAP for obstructive sleep apnea


CPAP Failure:
Now, this is where things get interesting:
In most cases, the removal of the tonsils and adenoid "cure" obstructive sleep apnea in up to 75% of people.  It is closer to only 25-45% in kids who are obese, have asthma or have Down syndrome.  Kids with Down syndrome are more prone to having persistent sleep apnea even after a T and A because of their small jaws, smaller mid faces, larger tongue or a narrow, high-arched palate.   So when something like CPAP fails, other options must be explored.

Obviously, you don't want to go hacking away at random structures of the child's airway.  How do you know where to begin?  Back at the beginning of September, Ellie had a Cine MRI under sedation.  Basically she was put into a sleep-like state and had a special moving MRI that is used specifically to look at how the head & neck anatomy acts during sleep.  This is a way to pinpoint exactly what structures (tongue, palate, tonsils, etc). are collapsing while sleeping and cutting off the airflow.
Ellie was pretty loopy coming out of sedation post MRI.  She wanted to rip our her IV until she discovered her pulse ox on her thumb.  Oooh light. . . pretty. . . .  Sometimes I think that sedation is rougher than anesthesia for Ellie.

Cine MRI:

Ellie's Cine MRI revealed that she has a large tongue aka macroglossia - at the base or back of the tongue and at the top of the tongue is large enough that when laying down it abuts the palate.  It also showed Epiglottis Insufficiency - basically where the epiglottis closes off the airway.  The epiglottis is located just below the tongue and it covers the trachea/airway during swallowing.  If the epiglottis is fully closing during sleep, it is blocking the trachea and decreasing airflow.

Function of Epiglottis
Photo: www.rise.duke.edu
Tongue causing obstruction of the airway while asleep

It was theorized that the epiglottis insufficiency is the result of enlarged lingual tonsils.  These are tonsils that you cannot see when you open your mouth.  Most people don't even realize we have these tonsils, as the lingual ones sit just below the tongue base.  If they are large, they cause an obstruction and they can also push the epiglottis closed while asleep.  It is thought that more than 30% of kids with Down syndrome who have persistent sleep apnea have large lingual tonsils.  Ellie has large lingual tonsils.

Photo: Anatomy of the Respiratory System Institut Pendidikan Guru Malaysia; slideshare.net


Goody.

Plan:  SMILE
Apparently, everything Ellie is having done can be summed up as the SMILE procedure.  It sort of cracks me up - SMILE!  We are going to do a SMILE on Ellie! Funny, I don't think we will be smiling when the day arrives.  SMILE = submucosal minimally invasive lingual excision

The ENT doc is going to remove the lingual tonsils.  This is going to go a lot like her previous tonsil/adenoid surgery, but with a slightly shorter and hopefully less painful recovery time (5-7 days average recovery).  I am pretty much going to follow what I did way back in April 2013 when she had her T and A with regards of what to bring to the hospital and how to make her comfortable post-op.

Tonsillectomy and Adenoidectomy recovery strategies for children with Down syndrome  - prepare for day of surgery and for post-op.

The other procedure that will be performed at the same time is a posterior-midline glossectomy, which is a fancy way of saying "we are going to make the back of her tongue smaller /less bulky".  This is actually a surgery that I am not fully familiar with, but it has been gaining in popularity among pediatric patients these past 15 years when CPAP and Tonsillectomy fail to alleviate sleep apnea. I will spare you the details, but believe it or not, it is probably the less painful of the 2 surgeries and the recovery time is only 4-5 days.

Photo: www.singhealth.com.sg

I am not exactly thrilled about any of this, but I know it needs to be done.  Sleep apnea is no joke.  It affects all health systems negatively.  Ellie's doctor is an excellent doctor (when doing research - I discovered several articles and studies conducted by her) who will take good care of the Bear.
So now I have approximately 28 days to have mini panic attacks on a daily basis.  Oh Ellie. . . why must things be so difficult?!

References:

Propst, Evan (2015). Lingual tonsillectomy and midline posterior glossectomy in children with obstructive sleep apnea.  Operative Techniques in Otolaryngology http://www.optecoto.com/article/S1043-1810(15)00009-3/fulltext

Ishman, S. (2012). Abstract: Pediatric Sleep Apnea and Surgery; Beyond tonsillectomy. Audio-Digest Ototlaryngology. http://www.audio-digest.org/adfwebcasts/pdfs/ot4518.pdf

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