Monday, September 28, 2015

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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Wednesday, September 9, 2015

Results of Ellie's MRIs, Ultrasound, and Blood Work

Last Friday, Ellie had a battery of test run at the Children's Hospital - to learn more, click here.

MRI of the lumbar spine = normal (Yay, no tethered cord!)

Renal / Bladder Ultrasound = normal (Yay, no kidney problems!)

Cine MRI for sleep apnea = awaiting results

Routine blood work of CBC, metabolic panel [this also shows kidney function], Thyroid panel, and vitamin D = normal

Weight Gain since starting predication = possibly 3oz give or take a few

Explanation for why this child is only peeing once every 19-24 hours = unknown

Explanation for Ellie's crazy GI issues = unknown

Do you see that the Princess Bear lost her first tooth?!

Ellie's pediatrician has recommended that she be evaluated by a urologist. I have been in touch with the only pediatric urology clinic in Austin and the first available appointment is in November. I think the scheduler was a bit flabbergasted when I explained what the appointment was for because she then had a nurse talk to me. I am pretty sure it was when I said "Ellie has decreased voiding frequency to one every 19-24 hours at a rate of 0.7 cc/kg/hour" that did it. . . The nurse then said "she really seems to have a lot of things going on so I will talk to the urologist and see if we can fit her in earlier".  I am waiting for a call back. What do you want to bet that some of this is related to her constipation and Periactin? Or maybe she is just being a urine withholding toot?

I also put a call into the sleep clinic and am waiting to hear back as we are trying to move up her follow up appointment (it is in December). The MRI results will be discussed at this appointment.

Debating on taking a vote on what Ellie's GI specialist will do given her lack of weight gain and GI issues. All in all, I am relieved that there is nothing wrong with my precious baby girl, but frustrated because we still don't have answers. Lack of answers means we don't know how to help my Bear.

So now. . . . we wait. . . 

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