A quick update on Urology/GI procedure plan

When I last left off, I mentioned that both urologists confirmed that they could perform Ellie's cecostomy and tube placement for Monday Sept. 12, but they wanted to discuss the surgical approach.  Well. . . I was confused because at our long awaited urology pre-op appointment, we decided on a laparoscopic approach with the possibility of needing to open her abdomen up completely.

Of course, the other surgeon was out of town so they couldn't not discuss immediately.  I gave 2 weeks and left a message this past Monday with the nurse.  Tuesday, I get a phone call from Ellie's secondary GI specialist, the one who performed the colon manometry back in June. He tells me that the procedure will be done in interventional radiology [IR] where they just "pop" the button right in.  It is less invasive and the hospital stay is closer to 48 hour as opposed to 4 days.  Obviously, this is all good, except, at our urology appointment in July, GI relayed to urology to not do it through IR because her colon may be too floppy from being stretched out.  What?!  So do they bring her into IR and if it doesn't work we need to relocated to the OR?

Friday approached and as usual, I never heard back from the urology nurse.  Dr. McQ, the actual urologist calls me personally.  Her surgery on 9/12 was CANCELLED back on Tuesday since her procedure will be performed in interventional radiology and not the OR. She assumed that I knew this already.  Urology is no longer in charge.  GI put in the orders.  Radiology is taking over. If GI was going to put in the orders, why didn't he do so in June?!  I immediately called GI and then googled the number for radiology.  Radiology never calls back, but GI does. . . only it is the other GI's nurse.  According to her, IR is booking into late November, early December.  I may have lost it.  I spent the afternoon angry crying.

first day of 1st grade

Timeline:

June 16th - referred to pediatric surgery by GI, then Dr. C in urology
Dr. C out of town, then takes another week to look at her case
Referred to Dr. McQ in urology and she is out of town
July 24th - urology appointment, tentative surgery date because need to coordinate with Dr. S
Dr. S it out of town so more waiting to coordinate
Both urologist can do the 12th, but need to discuss approach, Dr. S out of town
August 30th - GI calls to change plan
Sept. 2nd - surgery cancelled
No new date yet.

She lost her front tooth!

This is ridiculous!  If she gets booked in December that is SIX months since the ordinal order was put in.  SIX MONTHS.  My daughter is in pain.  PAIN.  She is uncomfortable and only goes with a special enema that I have to constitute myself.  We can only give those enemas twice a week which is not enough to help her.  Her medications do nothing.  She spikes fevers because of this.  She had to have a urinary catheterization due to being unable to pee and screaming secondary to constipation.  This is unacceptable.  I will be rattling radiology's cage.  I will cry and beg for my daughter, but it isn't like I can personally create an opening in IR.  I will contact a patient advocate in hopes of filing a complaint.  Other than that, all I can do is scream and watch Ellie suffer for another 2.5 to 3 months while they all had their thumbs stuck up their *sses.  It seems they all forgot that a real human child is involved.






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Entourage, Little Thief, Oxygen, Urology

Hide the silverware!  My daughter is a thief.  She steals.  She is sly and crafty.  Ellie is obsessed with magnets.  Seriously, not metal object is safe around her.  She carries around her magnetic toys.  We were recently at a restaurant and when we returned home, she whipped out a fork from her backpack.  This was not a fork from our house.  No, girlfriend stole it from the eatery.  My goal is to nonchalantly return this eating implement to the restaurant. In the meantime, I will be searching her backpack before we leave any establishment.

I have been negligent on taking pictures and posting Ellie's entourage on Facebook.  That is not to say she isn't packing everything, but the kitchen since in her backpack.  Far from it.  She is MacGyver.  A boy scout of the "always be prepared" sort.  Some of the more entertaining items (aside from the fork):

Necklaces
Oven mit
Plug to the bathtub
Receipts (tons of receipts)
Napkins
Cups
Medical gloves
Sticks
Rock
Play dustpan
Safety googles
Spare shoes
Straws
Measuring spoons

Apparently, Ellie thinks she is going to be doing some cooking.

Andrew and I have been going on date nights lately!  We have this awesome respite care provider, but she left for college this week.  Arms crossed and foot stomp at this development.  Anyway, we have been trying out different restaurants and recently went swimming at Barton Springs.  It was so cold I couldn't even catch my breathe.  Of course, Andrew spent the evening telling me that the water felt great.

I would love to have a blog post without medical updates, but unfortunately, it will not be this post.

Today we had an appointment with Chest and Sleep Clinic.  A while back, we learned that Ellie had obstructive sleep apnea.  We did a lingual tonsillectomy and glossectomy (tongue surgery).  With a repeat sleep study, we learned that the surgery did indeed help alleviate some of the obstruction.  Unfortunately, she seemed to have developed central sleep apnea (basically the brain forgets to tell  you to breath).  A brain MRI revealed no organic cause for central apnea.  Because she refuses (actually is quite combative) the CPAP, we are now starting her on oxygen at night.  Fingers crossed she tolerates it.  I plan on putting on the nasal canula after she is asleep.

I made Belly Bands to cover up Ellie's C-tube so that she doesn't play with or pull at it.

Ellie's cecostomy surgery date is still tentatively for Sept. 12th.  Yes, it is still kind of sort of up in the air.  I am not happy.  I like things set in stone.  We have two urologists in the OR.  Both agreed that they were free for OR time on 9/12.  However, they are still deciding on how they are going to approach this surgery.  They may need a radiologist in the OR.  If that is the case, they may not be able to coordinate all 3 people which may mean a different surgery date.  Of course, the one urologist it out of town.  Seriously, they are always out of freaking town. She needs this surgery sooner rather than later.  Last week, Ellie had to be catheterized at the pediatrician due to a UTI and urinary retention.  Constipation can lead to urinary retention.  Ellie was doing so well until she well, wasn't.  She was crying and signing potty, but could not go.  Fortunately, the catheterization fixed the problem.  I do not want her to go through all of that again.

Hopefully, the next time I blog, I will have more exciting news to report.  No wait, boring.  I would love for life to be boring!




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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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Urology, Oliguria and Happy 6th Birthday, Ellie!

About 3 weeks ago I left off with the results of Ellies MRIs, Renal ultrasound, and blood work results - all to look at why she isn't regaining weight even with the appetite stimulant, why she isn't peeing, why she isn't pooping, and why she doesn't breath at night  -  ah, basic life functions going haywire.

Funny thing here, when Ellie was born and we learned that she had Down syndrome, I immediately worried about her heart.  After all, it is said that up to 50% of kiddos with Ds can have a heart condition.  Well, Ellie did have a hole in her heart.  A small one.  Not real exciting.  Closed at a year old.  That was that.  Never did it cross my mind that Bear would have a whole slew of health issues completely unrelated to sporting an extra chromosome (well, aside from the sleep apnea which tends to be more common in people with Ds).

These two turkeys crack me up!

So. . . not peeing.  I would LOVE to tell you how Bear's urology appointment went only she hasn't been seen!

Brief history:

Ellie is not potty trained.  She is not purposefully holding onto urine and refusing to void.  She is not secretly peeing in the toilet without us knowing.  She isn't leaking small amounts of urine into her diaper.  She never acts like she has to go, but will occasionally have to "push" to pee, usually after 20+ hours.  She is peeing once every 21 - 24.5 hours.  She is peeing at an average rate of 0.7 cc/kg/hr.  Normal urinary volume for a child her age/size is 1-2 cc/kg/hr.  So, she has decreased voiding frequency and decreased urinary output (oliguria).  Not horrendous, but not normal.  Failure to void on a regular basis can lead to urinary tract infections [UTI] and can also cause urine to back up into the kidneys and cause damage.  So not peeing for 24 hours is sort of a problem.  Not to mention uncomfortable.  I am doing the potty dance right now just thinking about it.

Her renal ultrasound was performed under sedation on 9/4 after 20 hours of not peeing.  Her bladder was moderately full.  Her kidney anatomy was normal.  Her right kidney is 1.1cm larger than the left.  It isn't uncommon for one kidney to be larger than the other - usually the left one, but the right can be normal too.  Now the size differential may be statistically significant since it is >1 cm size difference. Also, the good news is that her kidneys have grown since a previous ultrasound.

"Hi everyone!"

Ellie's BUN  and Creatinine levels were normal - blood work that measures kidney function.  Her spinal MRI, ordered by her GI specialist, was also normal.  This ruled out tethered cord as a cause for her constipation and urinary issues. We were referred to urology on 9/9/15.  Austin is and has been having a huge growth in population.  Lots of young adults and young families are flocking to the Live  Music Capital of the World or Silicon Dessert.  Unfortunately, the number of pediatric urologists have not caught caught up to this population boom.  There is 1 pediatric urology clinic in the Austin area.  This clinic has 4 doctors.  Two of them work with voiding issues.  When I call, just to talk to a scheduler "you are caller # 1" is 17 minutes average on-hold time.  SEVENTEEN!

Anyway, I finally talk to a real live person and I kind of flabbergasted her when she asked what we needed the appointment for.  I know a lot of key words - see early paragraph about "brief history".  Spouting off kidney sizes, history of Ds, failure to thrive, GI issues, urinary output kind of startled her.   She connects me to a nurse.  The nurse then goes "let me see if one of our urologist can access Ellie's ultrasound because we are booking in November and I don't think she should wait that long".  I was told I would get a call back.  I never did so I followed up myself.  They created a chart for Ellie and in her chart it says that the urologist wants to see her in 2-3 weeks.  I am told that they will call with an appointment.  They never did.  Notice a theme?  As it turns out, when they say they want her seen in 2-3 weeks and that she shouldn't wait, it means that they are NOT squeezing her in but rather adding her to a rather long wait list that anyone can be added to.  It also means that nearly 3 weeks have passed and she has still not been seen.  Her current appointment is for November 30th.  Over 2.5 months from the time of my first phone call.

Ellie was so excited about the cake. . . until Andrew took away the remainder of the cake.  Apparently, Chunky Chicken though that she would get to eat the ENTIRE cake and not just one piece.

To say I am peeved is a bit of an understatement.  What kind of practice is this???  I am not ignorant of how things work in the medical field.  I used to work as a pediatric ENT nurse practitioner in Philadelphia where our first available was over 4 months out.  I was the one who would work certain new patients with complex medical issues into the schedule.  Overbook appointments because some of these kiddos couldn't wait the 4 months.  Discuss with the doctor and make sure the patient was seen.  Being a squeaky wheel doesn't see to be working either.

Again, these two crack me up.

So what now?  We wait and wait and wait.  She finally gets seen at the end of November only for the doc to order tests.  Like a VCUG or something along those lines.  Then we wait to get scheduled for that and then wait some more for the follow up.  At this rate, the poor kid will have damaged kidneys.  Right now, I am trying to come up with a plan of action which will involve enlisting the help of Ellie's pediatrician.  I just feel so helpless.

Okay, I am done complaining.  Nothing is accomplished by ranting other than me feeling a bit more sane!  The pictures in this post are from from a small birthday celebration that included Bear's best friend and a few family members and close family friends.  It was a great deal of fun and I know that Bear got a kick out of the Mickey Mouse cake.

Happy 6th Birthday, Ellie Bear!

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