Tuesday, April 11, 2017

It is always something

I feel like every other week, there is something going on health-wise with Ellie.  Yesterday, we had our follow up with urology.  Ellie was quite naughty.  She has this thing where she throws things off tables and giggles.  She also throws things off exam tables like her iPad, which is now cracked.

We discussed Ellie's urinary issues where she strains to urinate and then may pees in her diaper 20 minutes later.  We also discussed her urinary retention issues.  There are a few options.  None of which I am thrilled about.

Someone will only keep her glasses on in 5 minute increments.

The first option is to put her on the cath program.  Essentially, we would have to catheterize her 3 x day.  This is where you take a catheter (a tube) and insert it through the urethra into the bladder to allow urine to flow out of the tube.  Obviously, this is not a good option for Ellie.  It would take at least 2 people to hold her down while I catheterize her.  Totally not happening.

The second option is a vesicostomy.  This is where you bring the bladder to the surface of the stomach to allow urine to drain.  She would have to wear a diaper to catch the urine and it would mean another surgery.

Fortunately, Ellie's kidneys, while small, are looking okay on ultrasound.  So I decided that we need to go with a wait and see approach.  Ellie will continue to get renal and bladder ultrasounds every 6 months.  If it starts to look like there is kidney damage, we will have to look at those 2 options.  I figure that her kidneys have been looking good for the past 2 years so they should continue to remain healthy.

We also were referred to nephrology (kidney doc).  Like we don't see enough specialists. Over the past several doctors' visits to specialists, Ellie's blood pressure has been high and she is on clonidine which is a blood pressure lowering medication that helps with sleep.  In children, aside from rising childhood obesity, blood pressure issues are related to the kidneys.  Surprisingly, we already have an appointment for next week. I can't believe we don't have to wait months to be seen! I don't anticipate any kidney issues and I imagine they will just monitor her.  Fingers crossed!

I was really hoping for a few months of calmness, but I guess that is too much to ask for.  I am feeling down about all of this.  Ellie always has something going on.  We just cannot catch a break.  Out of all of these health issues, only the sleep apnea is related to her having Down syndrome.  I do not know why she has all of this, but I feel bad for her and I am sick of it all. Fortunately, most of these issues are minor and she is relatively healthy.

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  1. Oh Ellie! You've got to let mom and dad breathe a little bit. I pray things will die down for a little bit!

  2. I agree with cmsavage6, mom and dad need a break! I will pray that you get one soon.


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