Wednesday, May 18, 2016

A bunch of updates: Miss Sassy Pants, Sleep surprise, GI/Urology, etc.

Ha!  I am going to spare you my usual spiel of "I am so sorry that I neglected the blog and I won't do it again".  However, I will promise you that this post isn't entirely about medical stuff. . . sort of.

The Sleep Study Results:
Why does it take so long to get results?  Three weeks to get the results.  Actually, it was 2 weeks, but the doctor neglected to call me because he was flabbergasted and needed to do a more comparative analysis of her previous sleep study.  Yeah, "flabbergasted" is never something you want to hear from a doctor.



To see her previous sleep study results (as in pre-surgery), click here.  Ellie Bear's hypoventilation (very low rate of breathing) has resolved!  As a result, her inhaled CO2 levels are near normal.  Her oxygen saturations for the majority of the night ranged from 92-94% (compared to 80% in the previous sleep study.  In more exciting news, she now has central sleep apnea.  Girlfriend can never doing anything half-*ssed and likes to keep us all guessing.  So. . . where did the central sleep apnea come from?  We do not know, which is why we are going to do an MRI of her brain just for sh*ts & giggles. . . can you all tell that I am just sick of this stuff.  Why the MRI, you ask?  Central sleep apnea tends to originate from the brainstem (or in some cases the heart).  Essentially, your brainstem forgets to tell your to breath.



Speaking of sleep apnea, I have it and so does Andrew.  A few months ago, Drew woke me up because I "wasn't breathing".  My allergies were horrible and he basically shoved Afrin up my nose and it cured me.  Last month, I was in Vegas with some friends.  Vegas, baby!  The cigarette smoke also mucked up my breathing and my friend informed me that I was obstructing.  Because I don't have enough doctors appointments before school lets out in 2 weeks (I have 5 and Bear has 2), I now have an appt. with my PCP.  I am wondering if this is why the past 3 month I have been averaging about 3.5 hours of sleep?  Very restless sleep.

My Fitness Best Friends (and texting buddies):
Michelle (my Ds blogging buddy and first time meeting her!)
Lindsey (former Canadian, former Austinite)
Lisa (fellow Canadian Beachbody coach!)


Motivation Fitness Takes Vegas:
Oh yes, my friends, I went on a girl's trip to Vegas.  That would be a trip without the child.  As in alone.  I am still a beachbody coach running my health and fitness group called Motivation Fitness.  Our Facebook group is full of amazing ladies.  We not only share our victories and support each other during health-related struggles, we have become friends.  Many of us had never met.  Last month, 10 of us took a 4 day trip to the Sin City.  From Vancouver, Canada, Montana, Florida, New York, Texas, Missouri, and Ohio, all of us had a wonderful time.  While we managed to clock in an average of 24,000 steps a day and while we also were a health group, it was our main mission to eat (and to pee -we are all moms with weak bladders) in every hotel room along the strip.

School: The IEP meeting
Nothing screams "welcome back from vacation" like an IEP meeting the morning after your flight lands.  The IEP meeting went well.  We have good goals in place.  Ellie will spend a majority of her time in a Functional Academic spec ed classroom [FAC], with appropriate push-ins for specials, lunch, and home work and other classes as tolerate.  The "as tolerated" = behavior is good.  On a sad note, Ellie will not be at the same school as next year.  Currently, Ellie goes to a school that is 30 minutes away.  While that is not ideal, her teacher and aides were/are amazing.  Next year, her home school that is just down the street from our house is going to have an FAC room.  Fingers crossed that we have an excellent teacher and aides next year.  Change is difficult.  Being shuffled around from different schools, different classmates, and different teachers can be tough on Ellie.



The Dysfunctional Voiding Clinic: NPs vs MDs and Gastroenterology + Urology
I love joint appointments.  It is so nice to kill 2 specialists with 1 stone.  As a follow up, Ellie is now peeing more.  As in 3-5 times a day now, compared to once every 18-29 hours.  Unfortunately, she likes to do things the opposite of "normal".  When she poops regularly, she doesn't pee.  When she doesn't poop, she pees more.  Go figure.

The Bear has lost weight again.  Not much, but this child should be gaining.  Like a ton.  She is on an appetite stimulant and she eats all the freaking time.  At first I figured "different scale", but after having 4 doctors appointments in 10 days and all 4 scales showing a similar weight, it could no longer be ignored.

Play-Doh Fun!
You can see that she lost a big of weight in her face.  We have also gone down a size in clothes.
This brings me to the awesomeness of Nurse Practitioners.  No, I am totally not biased given that I am also a NP.  I have battled with Ellie GI doc for a few years now.  Always dragging his heels on trying to figure WHY she has severe constipation and WHY she loses weight.

GI NP: She has had a colonoscopy, right?

Me: Nope.  She needs one and will get one next month with her testing

GI NP: She has had stool studies, right?

Me: Nope.

GI NP: How about an upper GI?

Me: Yes!  Just a few months ago after begging the doc for one for 2 years.  We ruled out celiac, h. pylori, and lactose intolerance and discovered esophageal gastritis instead.

So, we did a bunch of stool studies to look for malabsorption.  Good news!  The studies were normal.  Bear's poop is normal.  Yay!



Disney On Ice:  
Two weekends ago, we took Ellie to Disney on Ice.  I wasn't sure how she was going to do during the 2 hours show.  She was so excited!  Before it even started, she was clapping and grinning.  Her enthusiasm was priceless and infectious.  She did great. . . provide Mickey Mouse was on the ice.  When he wasn't, Ellie was telling us "truck, buh bye, Noble Pig".

This all brings me to next month: Surgeries and Hospitalization:

It is always great fun to kick of summer break with a 3 day hospital stay.  Right?!  Okay, this is gross, but we will be admitting Ellie to the hospital for a bowel cleanse.  Think dropping and NG tube from her nose to stomach and pumping her with a full gallon or two of GoLytely.  The following day, Ellie will have a colonscopy and the placement of a colon manometry tube.  Essentially this tube will remain in her colon and be taped to her butt or thigh until the following day when we will hook it up to this manometry machine.  While she is under anesthesia, she will also have her brain MRI with contrast and her yearly routine blood work.  The following day, is the colon manometry which will look at pressures throughout the colon - identifying if there is delayed colon transit and if so, if there is a specific part of the colon where this occurs.  Then, home!

The following week, I get to have surgery.  For the past 2 years, I have been battling woman's health issues.  A variety of treatments have been tried with no relief.  More drastic measures will be taken and I will essentially lose my fertility.  No more kids for us, so if one more person asks if we will have more. . . I feel like I am way too young for this nonsense, but at 35 years-old, I am apparently of
"advanced maternal age" even though I have quite a few older friends who are currently pregnant.

Haircut:
I cut the Bear's hair myself.  We keep it short for a few reasons: 1. She chews her hair; 2. It sticks to her messy Nutella face; 3. Drew loves it short; and 4. It gets scraggly when it is longer.  The reason I am the one to cut her hair is because she hates it.  It is like medieval torture to her.  She does okay with the back, but the sides freak her out.  Perhaps the sound of the scissors? Or maybe having a sharp object near her face?  Sensory issues?  The thing is, if I take her somewhere, she is still a wild banshee child and no amount of fun toys, movies, little riding things help the matter.  I end up paying for the haircut that looks just like my hack job and I feel the need to tip a ridiculous amount because the Bear is a tornado.



Tama Boo:
In sad news, our beloved, black cat, Tama, has been missing for a week now.  She is usually indoors by 9pm and comes when called.  There were storms last Tuesday night and Tama is petrified of thunder.  I have called/ searched for her, all the neighbors in a 1/2 mile radius are looking for her, and I have posted her picture on Next-door.

So even though it sounds like there is a ton of chaos over in the Theurer household, we are staying afloat.  Bear's new favorite word are "oops" and "buh bye".  Any time someone drops something "oose!" [oops].  Any time we leave a room, a toy, or someone leaves a room, it is "buh bye" with great drama and a princess wave.

School is almost over and I am really looking forward to July.  When all this medical stuff is behind us and when I can sleep past 5:45am. . . and instead wake at 6:45am.




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