Tuesday, April 18, 2017

Why I let men 7 year-old carry a blankie

My daughter was given this pale pink lovely as a gift.  Angel Dear lamb.  She loved it.  She actually still loves it.  She never took a pacifier.  She never sucked her thumb. Yet, she latched onto that blankie and chews it.  We have multiple blankies.  All  are the same.  Only Ellie realizes that they are not the blankie.  Her blankie is now pale grey and nasty.  I have 2 other blankies that she has deemed acceptable.  Also grey and well loved.  One is constantly in the wash.

She is 7 years-old and still chews on the the lovey.  She sleeps with it.  She takes it to doctor's appointments and it comes with us to restaurants and outings in her backpack which also holds diapers, wipes, and the iPad.  In public, she has blankie, but she doesn't chew on it.

I was one of those parents who was going to be all "alright, she is 3 years-old, cut the ends off the pacifiers!".  Yet, 7 years later, I still let me child suck on a blanket and take it out in public.  The things is, I. don't. care.

Ellie also has a sleep disorder, she has great difficulty falling back asleep.  She used to wake up sometime  between 12:30-2:30am and not fall back asleep until the following night.  One of the things that soothes her and calms her for sleep is the ratty lovey.  Again, who am I to take it away?  After all, mama needs some sleep too!

I don't really care because there are more important things to get worked up over. Never mind that my daughter is just now developmentally at a 3 year-old level.  My daughter has been under anesthesia 14 or 15 times (yes, I have lost count) for some surgery or medical procedure or other.  She has been hospitalized twice in the last year.  ER visits.  A least one appointment with a specialist visit each month.  We have 3 last month.  If her blankie gives her a bit of comfort, who am I to take it away?

So while my daughter may be 7 years-old and lugging around a blankie, I have decided to focus on other things.  On more important things.

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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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Wednesday, April 5, 2017

The Missing Cecostomy Tube

Oh Ellie Ellie Ellie.  Life is never boring in the Theurer household.  It is always something and that something can usually be traced back to the Bear.

This past Sunday, Ellie decided to remove her cecostomy tube.  She went in her room for one minute and walked out into the kitchen completely naked, minus the tube.  I about died.  This of course necessitated a trip to the ER where they are to insert a Foley catheter (a urinary catheter) into the hole to keep it open.

The thing is, we couldn't find the tube.  I mean she had to have just removed it.  Right?! Maybe.  Did she remove it earlier and we just didn't notice?  We checked her clothes, all the rooms of the house, drawers, the trash can and nothing.  How did it disappear? Also, how she get this tube out without any pain is beyond me.

My parents were visiting so it was mom, dad, Andrew and me all accompanying Ellie to the place of germs.  I discovered a few things: 1. a cecostomy is so rare that the docs had never heard of it; 2. it was up to me to educate them on what a cecostmy is, what the tube looks like, what size catheter to use, and how far to push it through the hole. That being said, they were really good about contacting the radiologist on-call.

It wasn't a bad experience.  For mild "emergencies" you can schedule an appointment.  Yes, an appointment at an ER.  They took us right away.  The doctors saw us right away.  They placed the tube right away.  The X-ray confirmation occurred quickly.  Then we waited another 3 hours.

Sorry for the gross picture.  This is when she had the infection.
Anyway, this is what the tube looks like outside the abdomen.

The normal protocol for when kids pull out their cecostomy tubes (apparently this is relatively common according to interventional radiology [IR] ), you place the catheter and then called IR the following morning to get on the day's OR schedule.  The ER docs decided they wanted her on the schedule before we left the ER.  At first they thought they could do it that day through fluoroscopy.  Then they realized that they were not sure they had the correct size tube.  Then they worked on getting us on to day's surgery for Monday.  They got it all worked out.

Monday, I call IR and request that they double check to make sure they have the cecostomy tube in the correct size.  Apparently, the tubes were under lock and key over the weekend which is why the ER docs couldn't figure it out.  The tubes are always in stock according to IR.

I don't know why she was so excited.

Day surgery went well.  We have decided to keep her tube covered with heavy tape and gauze and to deal with the skin issues that will arise because of bandages.  The IR nurse gave us an abdominal binder to also cover the tube.  I cut it down to size and it goes from her lower ribs to her hips.  Ellie does not seem to mind this.

I am anxious and paranoid.  How are we going to keep this thing in?!  My thought that if it comes out before a year is up, we should just let it close and I talk to GI about the Malone procedure instead. The Malone procedure involves bring the appendix to the belly button and then you catheterized the belly button.  The enemas would go through the catheter.  There is no button, no equipment.  I will be squeamish.

As for where the tube ended up . . . well let's just say Sophie dog had it in her mouth the following morning.  Yuck!

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Wednesday, March 29, 2017

IEP Meeting, Behavior, Vision

When I last left off, I talked about Ellie's regression and the need to move her into a different classroom setting.  I know that it needs to be down.  That it is best for Ellie at this time, but I am just not happy about it if that makes sense.

Last week we had Ellie's IEP meeting, which was completely anticlimactic seeing as I met with Ellie's Functional Academic Class [FAC] teacher twice and her new Functional Communication Class [FCC] teacher.  It was more of a formality - sign the paperwork.  I am really glad that I met with the FCC teacher in advance.  I felt so much better afterwards.  We discussed goals and she showed me in detail how she will teach Ellie and help her to accomplish her goals.  I think that this move will be good for her.

I was, however, not happy the decrease in inclusion time.  In FAC, she would spend 30 minutes with the 1st grade and then specials (art, music, and PE).  In FCC, she loses most of that. She does get reverse inclusions where they bring a typical kid in from the 1st grade to be with her for about 30 minutes. I don't really think that counts, in my opinion. The reason they are taking away inclusion time is because "with her behaviors, she requires too much redirection and is not getting much out of it".  My concern is, how can she learn appropriate social behaviors if she cannot be around and model herself after typical kids?  We did negotiate and decided that she can float into FAC for announcements, lunch, and recess.  With recess, she will remain with the 1st and 2nd grade class, which is good because there are 4 girls that love to play with Ellie.

Rather than wait until the next school to move Ellie to her new classroom, we decided to transfer immediately to the FCC room.  So on Monday she started FCC and I am told that she is doing well.  Minimal behavioral issues.  I think that I just jinxed her!

Two weeks ago we started weekly Applied Behavior Analysis [ABA] therapy in hopes of building up Ellie's social skills and working on her problem behaviors.  She has some 1:1 time with the behavioral therapist and some time to be with other kids.  I have been informed that she does really well at following directions.  Humph!  I wish she did that at home!

At the recommendation of the ABA therapist, we took Ellie for an autism evaluation yesterday at neurology.  We learned that Ellie has bad ADHD.  No kidding!  The doctor said that while she has some autistic-like behaviors, which is common in kids with Down syndrome and developmental delays, she does not have autism.

I recently ordered the book Supporting Positive Behaviors in Children and Teens with Down Syndrome.  I am hoping that maybe I can learns some tips to deal with Ellie's behavior and maybe gain some understanding.  I shall report back after I read the book.

We went for our annual ophthalmology appointment on Monday and learned that Ellie has great difficulty seeing out of her right eye.  It crosses a lot.  So we have the great pleasure of trying to convince Ellie to wear glasses.  I am wondering how much her poor vision has affected her school work?  Is she acting out more, trying to escape work, because she cannot see the learning materials?

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Tuesday, March 21, 2017

World Down Syndrome Day 2017: what to say

I struggle with this post, mainly because I have no idea what to write.  I feel like I have said everything in previous years' posts.  When Ellie was younger, Down syndrome was all I could think about.  All I could worry about.  Today, it isn't in the forefront of my mind.  It is just an after thought of "oh yeah, she has an extra chromosome.  She has Down syndrome".  Ds is sort of in the back of my mind when I think about her developmental delay (mainly lack of speech) and her future as an adult who will want to be as independent as possible, but that is it.  Her non-Ds related health issues and her naughty behaviors are what take up most of my worries.  Down syndrome isn't as scary as I thought it was years ago.  It isn't the end of the world.  It isn't all consuming.  It just is. Ellie is doing everything that a typical kid would do, but at a younger developmental age.  She is progressing (well aside from potty training and social behavior). She is just like any other other kid.  So to all your new parents, do not be afraid.  Your child is a unique being who will bring great job to your lives.  The Down syndrome is just a small, non-scary part of them.  Ds does not define who your child is.

Previous WDSD posts:

World Down Syndrome Day: a celebration 2015

World Down Syndrome Day: Ellie Video 2014

World Down Syndrome Day: an equal opportunity gene 2013

World Down Syndrome Day 3:21 2012

3.21 World Down Syndrome Day 2011

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Monday, February 20, 2017


Since we pulled Ellie out of school on 12/3 for her surgery preparation, she has regressed in both potty training and in social skills.  She missed most of December due to her surgery and winter break.  I believe that this has contributed to her regression as well as:

Surgical recovery with pain
The wound from the adhesive tape - also pain
The 2nd stage of surgery on 1/20 - more pain
The subsequent infection at her cecostomy site - again, pain

All of these things have affected every aspect of her life and I think her pain and frustration were being taken out on the other kids.

First off, potty training.  We have struggled for years with potty training due to her urinary retention.  Before surgery, I would take her every hour.  She would strain, but pee on the toilet.  She was having around 1 accident a day and we had her in underwear at home and at school.

Anesthesia causes acute urinary retention and because of this, she needed to be catheterized 4 times while in the hospital recovering.  I usually request that the OR nurse cath Ellie before they pull her anesthesia and this usually helps.  It did not this time.

Now, Ellie is having multiple accidents a day.  I still take her every hour.  She strains and pees a little bit, but 20 minutes later, her diaper is saturated.  It is as though she is not completely emptying her bladder.  I am no longer sending her to school in her underwear.  I am wondering if this is still the effect of anesthesia?  If it somehow changed her urinary retention?  We see urology in 3 weeks and I hoping that the doc can give me some insight.

Social Skills:

This is our biggest issues and it is affecting everything.  Her ability to make friends and her ability to learn academically.  We noticed just before her surgery that Ellie was having trouble concentrating.  She was tearing stuff off the walls at school, not sitting, and requiring lots of redirection.  We added a new ADHD medication (the one that caused her to gain 7 lbs in 6 weeks) and it helped once we got the right dosage.  Unfortunately, it did not help with her social behaviors.  For the past 2 years, every once in a while we would have incidents where she would grab other kids' shirts or tackle hug them.  It would seem like there was no trigger.  She would be playing nicely and then suddenly grab.  Obviously this doesn't help build friendships.

Post surgery, it is occurring multiple times a day at school, in the therapy waiting room, at dance, and at restaurants with playscapes.  She is pulling shirts, one time pulled hair, and clearing stuff of other kids' desks.  We believe some of this is her lack of communication.  She cannot say " I want to play with you" or "I like your hair/shirt." We also see it more if it is especially crowded and loud.  Some of it is her trying to get out of work and some may be attention seeking.

Unfortunately, the teacher is recommending that we move her to a different setting next year.  Right now she in FAC, which is the functional academic classroom.  This class focuses more on academic goals and there is more inclusion.  He wants to move her to FCC, which is the functional communication classroom.  The focus is more on communication, has a smaller class size, more aides, and less inclusion.  His hope is that one year in FCC will be enough and she can return to FAC.  I am conflicted and stressed. On one hand, I know that this is probably a good move for her. She can't focus on academics when she is acting out this much. On the other hand, I am wondering, did I fail her or did the school?

We are currently trying to get her into an ABA social skills group, but we are running into several obstacles.  The places either have long waiting lists or require her to be autistic.  One place would only take her if we agreed to 35-40 hours a week.  Like we could afford that.  We have one place that says they have space, but they will not call me to tell me the day and time of the week or when she can start.  I don't understand why it has to be such a battle.

I have requested a functional behavior assessment at school.  After this assessment, we will develop a Behavioral Intervention Plan [BIP].  Right now, we are addressing her behaviors the same way her teachers does so that we are consistent in and outside of school.  I would love to tell you that it is preventing these behaviors, but I would be lying.  I am at the end of my rope and feeling pretty helpless.

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Wednesday, February 1, 2017

Weight Gain, Cecostomy, and Constipation

The Chunky Chicken is back!  Ellie's ADHD has been out of control.  She won't sit in her chair, is shoving things off kids' desks at school, and tearing pictures off the walls.  At home, she gets distracted putting on her shoes.  One shoe half on and "oh my goodness, I must go over there!".  She does great in the mornings, but in the afternoon, it is as though we never gave her the afternoon adderall.  Unfortunately, she has maxed out of the Adderall dosage-wise.  As in we cannot go up on the dose.  So we started a new, non stimulant medication.  The main side effects are fatigue (She is going to be at 6:30pm now!) and weight gain.  The weight gain is excessive.  She is gaining 1 lb a week and eating nonstop.  Sadly, the GI doc warned us that if she gains too much more, she may need to go on a diet.  Honestly, I think that she has already gained too much weight.  Yes, she had failure to thrive and needed to gain weight, but this is excessive and piling on too quickly.  It is unfortunate, because I feel like this new medication is working.  Yet, I have to weigh things - ADHD out of control or weight gain with the associate diabetes and high cholesterol.

In other news, where I last left off, Ellie hadn't had a bowel movement in 19 days.  GI wasn't coming up with a good solution or taking me seriously.  Well, after 21 days, they had us come in for an office visit.  The new plan was to give a SMOG enema through the cecostomy tube.  Usually, we put in normal saline.  A SMOG enema is saline, mineral oil, and glycerin.  These are the types of enemas we used to give Ellie rectally.  That night, I was supposed to give 180 mL of a SMOG enema followed by 180 mL of saline.  Well, I only got in 30 mL of the SMOG enema before the tube clogged.  Did all the oil and glycerin clog the tube or was there a big ole piece of stool blocking the tube?  I waited a while and was able to get some saline in.  I called GI in full on panic mode and asked if I could mix the 180 mL of saline with the 180 mL of the SMOG enema to make it less viscous and it worked!  I was able to get all of it in and we got results!

The following day Ellie had her Chait Trapdoor placed.  This is the permanent button in her colon.  It was a quick day surgery and she recovered nicely.  They used guided x-rays to place the Chait Trapdoor and we discovered that after 22 days, her colon was cleaned out!  The post-op nurse spent a great deal of time going over what to do if the button comes out.  Apparently, this is a common thing.  Yet, if you see what the Chait Trapdoor looks like, you'd think it would hurt if pulled on.

Chait Trapdoor

We are now doing every other day saline enemas and they seem to be working (I don't want to jinx this so I am knocking on wood right now).  Even though it has been nearly 2 weeks since the button was place, Ellie is still having a lot of pain when I open/shut the trapdoor and when I attach the adapter device.  I called Radiology to see if this amount of pain is normal this far out, but of course I never heard back.

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Sunday, January 8, 2017

Cecostomy: post op complications

Warning: a bit of TMI about bowel function and graphic skin photo

Things can never be easy when to comes to the Bear.  We are 4 weeks post-op cecostomy tube insertion.  Things started off well.  The insertion site looked good.  The first 2 enemas through the tube worked well.  The third enema did not.  The 4th produced good results.  After that, the enemas stopped working all together. (She hasn't gone since 12/27).  We have increased the amount of fluid twice and are now adding crushed ducolax to the salt water.  We did an abdominal x-ray to check the position of the tube as well as "stool load".  Shockingly (I am being sarcastic here) she is full of poop.  Way up near the tube in the ascending colon as well as the transverse colon.  Fortunately, the tube is in the correct position. It can take a bit of time to figure out how often to give the enema, how much fluid, and what type of fluid to use.

Often time people mistake constipation for diarrhea.  You have a hard mass of stool unable pass and the stool above the mass is watery.  That liquidy stool flows around the hard mass and gives the impression of diarrhea.  This is sort of what we are seeing.  We give the enema and brown water comes out.  Tons of brown water that creates quite the mess and scares the crap out of Ellie, but no formed stool or even loose poop.  So we play with the enemas - the amount, the frequency, adding the ducolax.

I am very disappointed.  The beginning was so promising.  It was an answer to our prayers.  Now, I am hoping that we can find something that works soon so that Ellie doesn't have so much abdominal distention and pain.

Ellie had a 4 day school week.  She was pulled out for 3 of those days. Not a great way to start off the year.

Post-op complication.  Ellie had this foam dressing attached to a clip.  The clip held the tube in place.  This dressing was to stay on until the chait trapdoor (permeant button) is placed.  Around this clip we have antibiotic ointment, gauze, and tagaderm (a clear type of dressing).  The drainage from around the tube was getting worse.  It was theorized that there was some back flow from the enemas up around the tube thus creating nasty drainage.  She started to form granulation tissue (excess skin tissue around the tube). Redness and pustules were starting to show up around the foam dressing.  She was seen by one of the radiologists on Wednesday and the foam bandage with the clip was removed.  Her skin was completely raw and excoriated.  Weeping and as though the top layer of her skin peeled off.  One third of her abdomen was affected. We went home with strict instructions to keep it dry and to use gauze only.  The tube was no longer anchored down meaning it could become dislodged easily, which of course freaked me out.

After just 2 days, the wound looked significantly better:

the wound looking much better.  This is all a reaction from adhesive.

We were seen by a wound care specialist who gave us some cream called Critic-Aid which is a skin barrier and broad spectrum antifungal.  It becomes like a wax coating on the skin.  On the "good" skin we applied duoderm, which is a hydrocolloid dressing that is great for sensitive skin.  On top of that, we applied another foam bandage with a clip.  So now the tube is anchored back down much to my relief.  All of this is loosely covered with gauze and then a netted band is over it.  Our goal is to have her completely healed in the next 2 weeks - in time for the placement of her chait trapdoor.

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