Friday, December 7, 2018

We are home!

Ellie was finally released from the hospital yesterday afternoon after a long 6 night stay. It wasn't until late Wednesday evening that she was able to tolerate being off the oxygen for more than 20 minutes. Well, she must have turned a corner because she didn't need to go back on oxygen since 4:30 pm that afternoon. We busted out yesterday and have been taking it easy since then.

Her lungs sound clear and her saturations are nearly normal. She has not needed an albuterol treatment at all today.  She is in great spirits with lots of playing. Our kitchen is trashed because her entire book library from her room apparently needed to be located next to the kitchen island.  So the Bear is definitely feeling better! Her pediatrician cleared her to return to school on Monday and not a moment too since since we have family arriving this week and I still have to finish shopping, wrapping presents, cleaning, etc.  



Wednesday, December 5, 2018

Two viruses, one bacterial infection, asthma, and a pleural effusion

So. . . we are still here. At this point, I think our resort fees should be waived as we continue to enjoy these lovely accommodations for an extended stay. I want to thank all of you for your prayers, positive thoughts, checking in on us, and offers to help out.  It is very much appreciated.

Ellie Bear was admitted to Dell Children's Medical Center back on Friday night for low oxygen saturations related to an asthma exacerbation caused by RSV and adenovirus (very fancy word for common cold).  She continues to improve, but we are having trouble getting her off the oxygen.

On Monday, Ellie spiked a 102.5 fever.  They did not do a chest x-ray, but rather wanted to see if she would repeatedly spike. I was not exactly thrilled by this since it was a new onset high fever.  The reason that they wanted to wait was to 1. not unnecessarily exposure her to radiation and 2. her lungs sounded much better and she needed less oxygen.   


Yesterday, her temperature was 101.4 so the doctors did decide to go ahead with a chest x-ray, which revealed left-sided pneumonia and a small pleural effusion (fluid between lining of the lungs).  She has been started on antibiotics for the pneumonia, but we will not drain her effusion since it is so small.  The effusion should resolve on its own.



Yesterday and so far today she has been requiring minimal oxygen support, but she continues to fail trials off it.  We did have to increase her oxygen last night while asleep, but we were able to wean down twice this morning.  However, the entire 5 minute trial off oxygen she dropped from 95% oxygen saturation to 83-85%.  Needless to say she is back on oxygen.  

Even with the new pneumonia and the pleural effusion, her lungs continue to sound good.  She is on only a little bit of oxygen and she is perkier.  Yesterday she sat in the chair for 12 hours and she didn't want to get back into bed at night.  That means she is headed in the right direction.


Tuesday, December 4, 2018

When can we bust out of jail? . . . er hospital

Hello y'all!  Can you believe it?  TWO blog posts in 1 week, but I wish that the posts were about fun stuff.  A few days ago, I mentioned that Ellie was in the hospital for adenovirus, RSV, and an asthma exacerbation.  She was admitted Friday night and we thought that we might get to go home on Saturday.

Lies!  All lies!

We are still here.  Ellie loves it so much that we decided to stay.  On Saturday, we attempted to wean her off the oxygen during the day, but that was a fail after 2.5 hours. Even with oxygen, her O2 sats stay between 88-92%.  (normal oxygenation is above 95% and oxygen therapy is typically started if under 88%).  Sunday, her lungs sounded much better and she was coughing a lot more (she coughed so hard that she projectile vomited all over me.)  True to Ellie fashion, she decided throw in a few more, non-major medical things. Because, why?



1. Peeing.  Why does my kid not pee!?  She seems to think that it is appropriate to urinate every 12 hours.  The doctors are not a big fan of this, but I told them I am not concerned.  The did a bladder scanner on Sunday night and showed she had tons of urine.  Just as the nurse gets the order to do a urinary catheterization, Bear pees.  Woohoo!

2. Ellie developed significant abdominal distention and harness.  She was not a fan of us even looking at her belly let alone touching it, but she did not cry out.  The x-ray revealed extensive gas. Most likely from her rapid breathing and inhaling so much air as well as stool at the lower colon.  We were still having constipation at home issues even with the enemas through her cecostomy tube as well as rectal enemas so she hadn't gone in a week.  Thankfully, yesterday she had two small BMs after giving a large volume SMOG (saline, mineral oil, and glycerin) enema rectally.  Her abdomen is still a little distended and hard, but it is still much better.



Fever, poor fluid intake, and more oxygen. Early Monday morning, the Turkey Bear thought it would be appropriate to drop her oxygen saturations and require an increase in oxygen twice.  We couldn't figure out why because her lungs were even clearer than before and she was coughing (this is good news).  We did get her out of bed for a while yesterday, she started to eat more again, and she was in a great mood.  She had trouble drinking and we were considering an IV, but we got her to consume small amounts of fluid throughout the day.

Ellie Bear also developed a fever of 102.5 so the doctor decided that if she continues to spike that high, we will do a chest x-ray to rule out pneumonia.  Fortunately, after the Tylenol wore off, she never went above 101.4.



Now for the good news! Last night (Monday night), we were able to decrease her oxygen a fair amount while sleeping.  This is a BIG step in the right direction.  She really needs to be able to go all night without oxygen while maintaining her oxygen saturations before 88% before we go home. I a really hopeful that she will be able to go a few hours today, while awake, without her oxygen mask.

Thank you, The Wish Connection for the visit and balloons!

The nurses, respiratory therapists, and doctors at Dell Children's Medical Center are great!  They value what I have to say.  They accept that I know Ellie better than anyone and they understand that I have a fair amount of medical knowledge given my professional history of being a PICU nurse (okay, that was 14 years ago and back when our charts were on paper) and practicing as a pediatric nurse practitioner.

Andrew had to post-pone his business trip on Sunday due to Ellie's hospitalization, but he has to fly out today and will be back on Friday.  Hopefully we will be home by then!  He has been visiting and relieving me for coffee breaks and meals as well also bringing snacks, toys, and changes of clothes and toiletries for me.  I don't to go home other than after the first day because, but I rather stay near the hospital as it is a 30-40 minute drive for us.  I would like to thank everyone who has been praying for us, sending positive thoughts and virtual hugs, brining me coffee, and offering to help.  I appreciate it more than you will ever know!

Sunday, December 2, 2018

In the Hospital: Asthma Exacerbation


On Friday, Ellie was admitted to the hospital due to respiratory issues as she had low oxygen saturations. We were hoping we could go home today (Sunday) but unfortunately we get to stay another night. However, we do think that she will be well enough to go home tomorrow. 

ER Friday Night


Last Tuesday night, she was having trouble maintaining appropriate oxygenation levels (typically want O2 sats above 88%) while sleeping even with her albuterol inhaler. I had talk to the on-call doctor and she prescribed steroids.  I feel like I should a listen to my mama guy because I really felt like we should’ve gone to the ER but the doctor told us we did not need to even know her oxygenation levels for 85%. 

She was much better the next day and we had a follow-up with the doctor. She was diagnosed with a  viral respiratory infection via nasal swab and her x-ray showed mucous plugging in her right lower lung, but thankfully no pneumonia. 


Saturday Night

She started to do a lot better but Friday night we could keep her above 80 to 85% and she was breathing fast while asleep. When we got to the ER, she was 81% while awake. We did 2 hours of continuous albuterol and then switch to every 3 hours. Needless to say she was admitted and has been on oxygen since then. 

This morning: Still on Oxygen.  This position is the best for her lungs and seems to be the most comfortable for her.

Her chest x-ray from yesterday showed no pneumonia and she has small little collapsed areas (alveoli) at base of both lungs. She is mainly presenting with an asthma exacerbation related to the RSV and adenovirus. 

We had expected to come home today but she failed when we tried to lower her oxygen last night. We are hoping that she will feel well enough to move around today and hopefully continue to cough up those mucous plugs. 

Monday, October 15, 2018

Hypertension In a Child


In previous blog posts I have written about Ellie's high blood pressure.  I have an update er, well updates.

According to the new pediatric guidelines, for Ellie's age, height %tile, and gender, her systolic blood pressure [top # of BP] should fall around 111 mmHg.  Ellie's average without blood pressure medication is 124 in the LEFT arm only and normal in the right arm.

High blood pressure in a child is usually due to cardiac issues such as narrowing of the aorta (a large artery that branches off the heart) or renal [kidney] issues.  However, with the increasing rates of childhood obesity, doctors are seeing more and more hypertension related to weight, similar to adults.

Flashback: October is Down Syndrome Awareness Month


In August, we were able to rule out all cardiac issues so that is not the cause of her hypertension.  We are currently evaluating her kidney function.  Many doctors start off with a basic metabolic panel that looks at things such as glucose, sodium, potassium, etc, but the main values that a physician looks at from that lab study is BUN and Creatinine.  I won't get into what those things are for, but high levels of BUN and Creatine can be a sign of impaired kidney function.  Ellie's were normal.  Other, more in-depth testing include assessing Renin, Aldosterone, and Angiotensin - again, I will spare you the details of their function.  Ellie's Renin levels are high.  Renin is an enzyme that is secreted by the kidney that helps regulate blood pressure. One of the causes of high renin levels is renal artery stenosis, which is is the narrowing of the artery that supplies blood flow to one or both of the kidneys.  This is something that is very rare with systolic BP usually above 170 mmHG and it is highly unlikely that Ellie has this . . . BUT, as the nephrologist said "this is Ellie".  Plus, she has been on clonidine for years and she is also on a calcium channel blocker BP med so we don't really know how high it would be without these medications. At this point, we are working on scheduling a CT with contrast (angiogram) or her kidneys, but it is not considered urgent.

Flashback: October is Down Syndrome Awareness Month


Hypertension in a child is typically diagnosed when the systolic reading is 10 mmHG above the 95% tile for age, height, and gender.  First line treatment for high blood pressure in a child is a calcium channel blocker - i.e. amlodipine. (Calcium Channel blockers tend to end in "ipine.)  A few months ago we started Ellie on Norvasc.  We some mild improvement in her blood pressure.  The nephrologist says that kids typically end up on higher doses than adults due to their higher metabolic rates so he bumped up her dose.

I don't know what happened and I don't understand it.  I measure Ellie's blood pressure with an automated cuff. This is the same cuff that I have been using for months.  After we increased her Norvasc, I noticed that her systolic readings were back into the mid-120s.  A few weekends ago, I took her BP and it was in the 130s.  I waited a few hours and she was 140 mmHg.  I didn't believe it.  I switched out the cuff to an adult one and took mine.  The I compared it to my Qardio cuff that I use with an app.  Both of mine were the same.  So . . . Ellie's reading was accurate.  I waited an hour and she was 147 mm HG.  Note that she had both clonidine and the higher dosage of Norvasc in her system.  A BP that high in a child is dangerous.  I had to call nephrologist on-call who told me to immediately give her clonidine (it is pretty fast acting) and that if it was still in the 140s in a few hours, she'd have to receive IV anti-hypertensives in the hospital.  It was odd.  I don't know why this happened, but the clonidine did work.

Uh huh . . . how long do you think she'll keep that on?  The eye patch is over her good eye.  The thought is the eye that turns in will correct itself.  We've tried glasses and then keeping her good eye dilated with no change (okay, she refused the glasses).  So this is our last ditch effort.

A few days later, the nephrologist upped her dosage of Norvasc again and it seems to be working.  Her BP has been averaging 110/60 so we are pretty happy with that.  Her renal CT scan with contrast still isn't scheduled as we are trying to do it the same day as her ABR and cecostomy tube replacement.  I hate waiting, but I only want to put her under sedation once.

The blood pressure machine that I use for Ellie is by Contec.  It is no longer sold on Amazon, but eBay has it and a few online medical supply sell it.  I have tried several automatic and manual cuffs, but this machine is the ONLY one that has a TRUE pediatric BP cuff.  Most the ones marketed as pedi are actually infant cuffs.  A blood pressure cuff isn't just about length to wrap around the arm.  It is about width.  It is supposed to cover a specific portion on the upper arm.  If the cuff isn't wide enough, the pressure will read higher.  If the cuff is too wide, the pressure may read lower.



photo: uptodate.com



Some cuffs are labeled with #s.  i.e. a child cuff may be labeled as size 9 so it is good to read the measurements.

While the Norvasc is working, it comes with an unfortunate side effect.  For Ellie, it is significantly making her constipation worse (it may cause the opposite problem in some people).  She used to get 250 mL of saline enemas through her cecostomy every other day.  She is now getting 250 mL SMOG enemas [saline, mineral oil, and glycerin] through her tube 2-3 x week - the max we can do and then 2 rectal ones a week - also the max.  It is frustrating because she is still only having a bowel movement every 5-7 days.  Seriously?!?!  She has a freaking tube in her colon for this stuff!  Unfortunately, it is something that Ellie will have to suffer through because I really don't want to her to be at risk for a stroke from a really really really high blood pressure.  If it gets to where is going more than a week, then we will have to figure something out because colitis and bowel perforation would suck.

Anyway, that is the big blood pressure update.  My next post on The Chronicles of Ellie Bellie Bear will be fun!  Horse therapy with Jack?  Yes!  Seeing the dolphins at Sea World?  Yes!  Reuniting with friends from The Wish Connection and seeing a Tim St. John, the magician?  Absolutely!  What about Morgan's Wonderland, an amusement park designed for children and adults of ALL abilities?  What fun!

Fun Photo Flashback:




Sunday, September 16, 2018

Happy 9th Birthday, Ellie!

Can you believe it?  Nine years ago, our world changed forever. . . for the better.  Yes, we were off to a rocky beginning.  Andrew and I nervous about being new parents.  (Andrew was scared to hold her and feed her) What if we mess up?!  Yes, we will mess up and then what?!  We were trying to get over the shock that our tiny, perfect baby surprised us with her extra 21st chromosome.  We were elated.  She's perfect!  We were scared.  We had this vision on how things were going to be and then the sassy Ellie Bellie Bear (yes, she was sassy even as a newborn) threw us through a bunch of loops.

I still cannot believe that I have a 9 year-old (read: that I am old enough to have a 9 year-old even though I have the white hairs prove it).  I feel like she was just a little toddler yesterday.  This year has brought many changes.

Ellie Bear is making a ton of friends at schools and when she is on her best behavior - with kids on playscapes.  She loves to dance in her 2dance2dream class and at home to YouTube videos.  Turkey Bear enjoys her horse therapy sessions and always asks to dance with her respite care provider, Kyla.  Over the summer, there was lots of father-daughter bonding time at the swimming pool.  The Bear stills favors Mickey Mouse over all other shows, but she does like The Wiggles (who she got to meet on her Wish Connection trip), Frozen, Nina Has to Go short stories, and Daniel Tiger's Neighborhood.  Her favorite bands to dance to include: Like a Storm, Skid Row, Guns n Roses, Queen, and Aerosmith (yes, I am raising a metal head). . . and just to add in some country (a true Texan), Cole Swindell.  Her favorite playtime is pretend play with her stuffed princess dolls.

She is trying to talk!  Ellie is imitating everything we say. . . as in after I said a choice cuss word at a guy who cut me off and she repeated the second half of the word. Hint: it rhymes with "sass".  Right now, her two favorite phrases are "there is (she/he) is!" and "bye y'all!"

Ellie Bear finally gained weight after being diagnosed with Failure to Thrive for 3 years.  She also grew a lot.  Who's taking bets that she will eventually be taller than my 5'2"?  Any takers?  



Wednesday, August 29, 2018

Surviving the Storm and a Speech Explosion

I want to thank everyone for the support that I received with my last post.  It is hard to be so open and honest, but I have learned that many people have felt the same way and many people have reached out to me offering support.  When I write these posts, it is for 2 purposes - to help me process my thoughts and to also let other people know that they are not alone.  Since the post, I have had actual adult conversations that were not with my husband, mom, or doctors.  So wooohooo!

We are surviving over here.  School has started and Turkey Bear managed to miss the first day.  Because of her psych issues, she lost it at cardiology on August 1st.  The EKG was a catastrophe so we had to give up.  The echo.  Well she was really excited about the echo - just hopped right up on the table and yanked her gown open.  I kept showing her pictures of her doing the renal ultrasound and said it is like that, but on her heart.  She would say “yeah yeah” and point to her heart.  Yeah . . . so when the tech put the wand on her chest, she got angry.  Kicking.  Screaming.  Yanking the wand to her abdomen because the tech was “doing it wrong”.  My little juvenile delinquent’s behavior led to ordering the echo and a CT scan angiogram (a fancy way of saying looking at blood vessels via CT scan) under sedation.  Of course the only day they could do it was the first day of school.  She’s totally starting off the school year on the right foot.





Ellie "helping" with her renal ultrasound in May.


I believe it was her 18th or 19th time under sedation/anesthesia and sadly they remember us.  Although, mainly because I stand there and say things like “she’ll need and I&O cath due to urinary retention” and  “could you give her that propofol again before you pull her out of anesthesia because she has emergence delirum?” as I hand them a word document detailing medications, dosages, why on them, and who prescribes them.  Apparently, most parents don’t do that? Just in case, y’all are wondering, emergence delirium is when the patient comes out confused after anesthesia.  Bear is a “tad” okay, very combative afterwards.  She has no qualms about ripping her IV out with her teeth (yes, through the tape) while kicking me from her bed with nearly enough form to knock me over.  Procedure and surgery days are so much fun!

I feel like in the top 2 pics that it looks like she just walked in her room drunk and collapsed on the bed.


Happy news!  Ellie has officially been discharged from cardiology!  Happy dance.  Happy dance.  Yay!  We dropped a specialist!  

Ellie’s heart is structurally normal.  We were looking at her aorta to see if it was narrowed and that was the cause of her high blood pressure [BP] in her left arm.  It isn’t because her aorta is normal!  Her left ventricle (the left lower chamber of her heart) has normal thickness.  With high BP, the heart has to work very hard to pump and the left ventricular wall gets thick.  She does not have this! Ellie does have a right aberrant subclavian artery that is looping around the back of her esophagus causing some narrowing.  The cardiologist says she will not move the artery unless she has lots of choking on solid food episodes and that has only happened a few times where she had to make herself throw up.  Anyway, we still don’t know what is causing her high BP.


Normal position of arteries branching off the aorta of the heart.



Ellie's arteries


Of course this means we get to go to nephrology every 2 weeks until we get her BP normal.  She is one Norvasc since the clonidine caused aggression and we have since gone up on the dose.  It seems to be working.  At her well check, we will do blood work that looks at kidney function.  I am pretty sure The Bear is fine from a kidney stand point.  Who wants to bet that we will never find the reason for her high BP?  Those who say we will get to watch Ellie for an entire week while I run off to a deserted island.  

Now in other, fun exciting news, Ellie Bear is really trying to talk.  





When I first heard her say “bye y’all”, we were leaving the drop in day care and I had no idea what she was saying.  It wasn’t until I put her in the booster seat that I figured it out.  The little turkey is a true Texan.






Someone loves swimming!







Follow us on Facebook! https://bit.ly/2NxWfPN

Sunday, August 12, 2018

Runaway Train: Emotionally Raw

Emotional Mess:

I like to think that sometimes it’s ok to have a pity party. To have it out and then take those deep breathes and dust yourself off. Sometimes the pity party lasts an hour, other times a week.  Sometime things suck for a while and you appear to handle it with grace and suddenly, it all comes crashing down at the most inopportune time. I mean, hey, it is totally normal to start crying in the workout section in the middle of Kohls (I’m thinking it would have gone better in the purse section, but oh well).

I am guessing you have by now figured out that I had a pity party in the middle of store and at home and in the car that lasted intermittently for a few days.  It was all an accumulation of things and then the fact that Ellie got 4 diagnoses and 4 new medications all within the span of the week.  I don’t know why the diagnoses bother me.  It is just a label for all the crap that she has been going through for a while now.  Anyway . . . 



It isn’t all medical.  Sometimes raising a developmentally delayed child is rough.  Sometimes raising a child who is delayed with a psychiatric disorder is rough. Sometimes, it is really hard to be around typical kids because then I know what “it could be like”.  

Ellie is almost 9 years-old.  Her speech is lagging way behind - at that of a 22 month-old according to her most recent speech evaluation. She has come a long way since getting her communication device (more on that in a future post), but at times, I am sad.  I want to have a conversation with her.  Hell, I can have conversations with 2 year-olds.  I want to ask Ellie what she did at school today with her not just sign “school” - essentially repeating the last word I say.  Yes, she is really starting to understand things and I am seeing a cognitive explosion, but I want to be able to do things like have tea parties at restaurants.  To have a conversation.  To have her fully potty trained (she is almost there!) and not pooping in her pull up.  I want to snuggle up on the couch and watch an actual movie with her.  Seriously, I still haven’t seen Brave or Moana or Trolls.

On top of that, Ellie’s behaviors are out of control.  For months, we haven’t found anything that worked.  The morning of her neuropsych appt was bad.  I internally screamed “I CAN’T do this anymore!  I am done!”  This of course led to more tears.




The Unquiet Mind:

Ellie has Down syndrome and that is nothing exciting.  She has multiple medical issues.  Also nothing of great excitement.  What is something.  What makes it most difficult to get by day by day is her behavior, her mood swings, her defiance.  

I always knew that she’d end up with an Axis 1 psychiatric disorder given our family history.  I just thought it was years down the road. She definitely has ADHD.  Her case is text book. She’s had it since she was 2 years-old.  We found the miracle drug of Adderall when she was 4.5 years-old.  A light switch went off.  All good things come to an end though.  She was maxed out of Adderall.  Thus began the search for new meds - for months!  We are still searching.  Medications she used to be on either didn’t work (i.e. after 2 months of stopping Risperdal and then restarting it - we saw no change in hyperactivity anymore) or they caused adverse effects (tics, uncontrolled body movements, mood swings, aggression).

I mean it is totally normal to have a Kleenex box flying by your head while in an exam room waiting for the psychiatrist because I wouldn’t give her a tongue blade.

This summer I thought we would get her regulated.  I had discussed with neuro that I was seeing signs of bipolar in addition to her ADHD and thus transferred her care to a neuropsychiatrist.  We’ve been seeing her every 6 weeks and we discovered a few things. 


The Rapid Cycler:

Ellie was on short-acting guanfacine (Tenex) for 3 years.  It is a blood pressure medication that works in the brain.  It worked great for hyperactivity.  WORKED as in past tense being the operative word.  This time, it caused massive mood swings.  Changing from minutes to minutes. Going from extremely hyperactive and singing to yelling, agitation, and hitting herself because I didn’t make her sandwich fast enough.  This is not a normal reaction.  After 3 days, I stopped it.

The Violent Child:

Ellie takes 0.2 mcg of clonidine at night for sleep.  This is another blood pressure medicine that works in the brain. It is also used for hyperactivity.  Nephrology and Neuropsych wanted to do a low dose (0.05 mcg) of clonidine in the morning for both her high BP and ADHD.  It was disastrous.  For the first 3 hours, she was very aggressive - biting, kicking, shoving my face hard, hitting herself.  Then at the peak, she would be a calm angel.  So yes, the clonidine was working once it reached peak, but we couldn’t release her in the world with her violent behaviors.

The Moody Child:
We started Ellie on Strattera for ADHD in May.  We noticed it helped with her focus.  We bumped up the dose in June, less focus but still better than without it.  I finally realized that her moodiness was caused by Strattera.  Interesting thing about this medication.  It works on norepinephrine.  Most antidepressants work with serotonin or norepinephrine - both neurotransmitters in the brain.  In people with bipolar or other mood disorders, a medication like Strattera or Zoloft without a mood stabilizer trigger the mood swings. Finally, Ellie now has the diagnoses of Neuro-developmental disorder and mood disorder with general medical condition (basically a mood disorder, but not a specified on like bipolar or borderline, etc).  We have started her on Trileptal which an anti-seizure medication that also doubles as a mood stabilizer.  Fingers crossed that this medication helps her without many adverse effects.

Coffee Therapy: Happiness in a cup


Superwoman Is A Fictional Character:

There are days where I say “I am done.  I can’t do this anymore.” and those days have lately seems to occur more frequently.  The thing is, we all know that I am not done.  It is what it is.  Ellie and I will face this together.  I am her mother.  Her caregiver and I will never give up on my child.  Ellie is my everything and I would do anything for her.  So no, I am not done and I will move forward as I always have for the past ~9 years.  This does not make me make me superwoman.  This makes me a mother who loves her child and you would be doing the same too.




 photo IMG_2291_zpsudykfi0h.jpg

Follow us on Facebook! https://www.facebook.com/pages/The-Chronicles-of-Ellie-Bellie-Bear/216738345037166

Thursday, July 12, 2018

Summer Fun and Medical Issues (secondary hypertension, coarctation of aorta, perioral dermatitis)


First, let's talk about the fun stuff!

Summer has been underway since the last week of May.  Ellie had her Wish Connection Trip at the beginning of June (see blog post to learn more about her trip and The Wish Connection) and had a blast!  It was such a wonderful experience for her and the rest of the family.

She is back to doing swim lessons.  I wanted to sign her up for 2 sessions, but the Bear has been busy with camps.  Ellie's swim instructor is incredible.  She teaches kids with special needs in the pool in her back yard.  A few years ago, the instructor and Ellie accomplished more in 1 lesson compared to the 6 lessons we had with the YMCA!



This year we signed Ellie up for horse camp in both June and and in July.  Her June camp went so well.  She had a blast and was on her best behavior. She managed to win the award for The Most Energetic Camper surprise, surprise.  However, since then, we increased her Strattera and noticed that she is less cooperative - not following directions as well and is more oppositional (the low dose helped so much with the shirt pulling, tantrums, and cooperation).  Her days are about 50/50 good/bad.  She has horse camp this week.  The first day she acted out the entire time with shirt pulling.  Tuesday, her behaviors were better, but she was crying for Daddy and fell asleep for 10 minutes. I thought that she may have been sick.  Yesterday was a great day.  On top of that, girlfriend is refusing to ride.  They put her on the horse and she screams and kicks.  She has been doing great the past 5 years so I am not sure what is going on.  She has a horse show tomorrow so we'll see if she is actually in it. Still, she is loving it and asks for the "horses and donkeys" daily.





My daughter is a Metal Head.  Ellie keeps asking to dance and grabs my phone to select songs.  She has her favorites.  She has favorites to dance to and songs that she claps when they come on the radio.  She loves Like A Storm (a modern metal band from New Zealand that uses the didgeridoo in some of their songs), Skid Row, Guns N Roses "You Could Be Mine", Aerosmith, Queen (yes, I know, not metal), and to throw a bit of country in there - Cole Swindell's "Flatliner" and The Wiggles, of course.  Hey, a girl needs well rounded musical tastes.

Dancing to "18 and Life" by Skid Row

Hypertension and Possible Heart Problem:

About a year ago, we saw nephrology due to high blood pressure, but her BPs were only high some of the time.  She got referred back this winter by cardiology as she had tachycardia (high heart rate) and her BPs were more consistency high - especially the diastolic, but not enough for a diagnosis of hypertension.  We were supposed to have a follow up in August, but we had to move up her appointment because:

1. her systolic (upper #) was climbing into the mid-120s (her diastolic normalize)
2. the blood pressure in her left arm is significantly higher than her right arm - by 9-13 mmHg

Typically, the most common causes of high blood pressure in kids are related to kidney disease and congenital heart defects.  This is called secondary hypertension.  As the childhood obesity rates rises, us health care providers are seeing more and more incidences of primary hypertension (adult hypertension).

Normal blood pressures for kids are based off age, gender, and height %tile.  For Ellie, her systolic should be closer to 112 mmHg instead of 125 mmHg.

Having one arm measure consistently more than 10 mmHg higher than the other arm suggests cardiac defects such as coarctation of the aorta or an aberrant subclavian or carotid artery (an artery that branches abnormally off the aorta).  In adults, this is usually a sign of a clogged artery.  We are wondering how long this has been going on because at some of doc visits over the past 3 years, her BP was performed on the right arm and other times on the left.  I discovered it when I was checking her a few times a week at home.
Ellie likes to do her own blood pressure after I do it.
This is the most accurate blood pressure machine that I have found  and that has the true pediatric cuff.
It is $64 on Amazon Prime and includes infant, pedi, and adult cuffs.


Coarctation of the Aorta is a cardiac defect often discovered at birth.  It is a narrowing of the aortic (that big vessel you see at the top of the heart).  Symptoms include a murmur heard on the child's back, breathing problems, easily fatigued, and blood pressure differences between the arms and the legs.  In mild cases, the child may experience no symptoms.  The problem with coarctation is that the left ventricle of the heart has too work a lot harder.  This can cause the high blood pressure and thickening of the ventricular wall.

Photo Credit: Health Jade


Ellie's nephrologist looked at the report of her January basic echo and it said normal aorta.  He contacted the cardiologist to see if we needed to do a doppler radar of the arteries or do anything.  Cardiology would like to repeat her echo.  Interestingly, typically, the abnormal artery is the right side, meaning the right blood pressure would be higher.  However, in Ellie's case, hers is the left arm.  That would be rare and I haven't been able to find any medical articles or case studies where patients had abnormal left artery. So, I am pretty sure her heart is fine and this is just another random health issue that The Bear has.

In the meantime, she has to take blood pressure medication as she officially has hypertension.  The nephrologist and Neuropsychologist  discussed and opted to start her on a morning dose of clonidine (she takes it at night for insomnia) as it helps with blood pressure and hyperactivity.  We start that this weekend - fingers crossed it helps her ADHD!


Perioral Dermatitis:

We are still dealing with Ellie's perioral dermatitis. Perioral dermatitis is a relatively uncommon dermatologic condition (~0.5-2% of the population) that occurs on the face - typically around the nose and mouth.  Women ages 25-35 are most commonly affected, especially those who wear makeup.  Steroids make it worse.  Unfortunately, Ellie takes an inhaled steroid for her asthma using a spacer and a mask.  Ellie started getting these round bumps around her chin and later her nose - all areas covered by her inhaler mask.  We tried treating is as though it was impetigo (a bacterial skin infection) with Bactroban (a prescription antibiotic ointment).  With no improvement, we switched to metronidazole (flagyl ointment), which is the primary treatment for perioral dermatitis.  Then we did hydrocortisone in case it was contact dermatitis.  I then decided to use lotramin (an anti fungal).  With the metronidazole, hydrocortisone, and lotramin, it would look like it was clearing up by day 3, but then get worse by days 5-6.  Eczema cream and her sunscreen make it worse. We tried switching her inhaled steroid from Flovent back to Qvar and that seems to have helped a bit. In May, she got referred to dermatology who is "working her in" on August 1st.  While it is not contagious and it doesn't bother her, it looks horrible.  I am thinking that perhaps she needs the rash scraped and maybe an oral antibiotic.


Perioral Dermatitis
















Wednesday, June 6, 2018

The Wish Connection: Ellie's Dream Come True

Earlier this year, Ellie was nominated to receive a wish from the Wish Connection!  We found out a few months ago that she was going to have a wish granted and we couldn't have been more shocked or excited for our Bearity Bear.



OUR STORY

Watching a child’s face light up with joy is priceless. Whether it’s a trip to Disney World, a swim with the dolphins or hanging out with a famous country singer, it’s the chance for a dream to come true and to lift up a child, and their entire family, along the way. That’s what we do as part of The Wish Connection. We’re here to grant amazing wishes, create smiling faces, and build a connection between families and a community that cares. The Wish Connection is a 501(c)(3) non-profit organization that was formed in the fall of 2006 by AT&T employees in San Antonio who wanted to be directly involved in granting the wishes of children who have life-threatening or chronically debilitating medical conditions. The Wish Connection is truly a unique wish-granting organization that has expanded its grant-giving to Austin and Dallas, Texas and several locations in California.

MAKING OF A WISH

To make a wish come true for so many deserving children, it takes the hard work of many dedicated staff, volunteers, donors and other supporters. Click here to learn more about the process of wish giving.
 
Our Mission: The Wish Connection is dedicated to granting the wishes not only of children with life-threatening medical conditions, but also the wishes of children who suffer from chronically debilitating (although not necessarily life-threatening) medical conditions.
 
Our Logo: Our logo represents how our communities can come together to lift up one child in his or her time of need. All of us, working together, form the star that represents the spirit of unlimited possibilities and the wishes of the children.



Ellie's Wish:
There is so much that goes into organizing a wish for a child.  Ellie's team consisted of, I believe, 18 team members.  There was a California Team and a local, Austin Team.

We had a general idea of what Ellie's wish was going to entail, but on Memorial Day weekend, 2 members of TWC Team came to our house with a beautiful Shutterfly book and binder explaining everything about Ellie's dream Wish.  I will be telling you about Ellie's dream wish mostly using pictures:

The big send off:
With a new Frozen backpack stuffed full of fun activities for our flight (donated by TWC), we prepare to head to Anaheim, California for a fun-filled adventure!  A few AT&T employees and their children brought donuts to our house while we waited for the limo to arrive.



The limo arrives at the Austin Bergstrom airport and we are greeted by another AT&T employee who helps us with our luggage.  Security was fun.  There was no line and yet, we were detained for nearly 30 minutes.  1. the stroller needed to be swabbed.  2. Ellie's travel oxygen concentrated needed to be looked at for a good 10 minutes. 3. my backpack which contained the power cord for the oxygen, medications (liquid, pills, inhalers, wound care ointments), snacks, and cecostomy supplies needed to be manually checked.  There may have been a minor fit as Ellie didn't want to keep her shoes on (children under 12 years-old do not need to take off their shoes to go through security) because mommy and daddy took off theirs so she had to throw herself on the ground, cry, and yank off her shoes.



We arrived at the Long Beach airport!  Again, we were greeted by a welcoming committee.  The balloons were a BIG hit!  Thankfully we had 3 people to keep Ellie entertained because there was a debacle with the rental car company involving the carseat.







Huntington Beach, California:
The Hilton Waterfront Resort (Huntington Beach): we got the VIP treatment.  Complimentary breakfasts each morning during out stay.  (so . . . Ellie is completely off the Risperdal and doesn't eat much anymore.  In case you are wondering, the buffet was $22.  Ellie ate 1/3 slice of bread.  That is some expensive bread!).  Her room was stocked with Frozen beach gear, her favorite snacks, and a bottle of wine for us tired parents!


We spent both our mornings in Huntington Beach in the ocean.  Bear was so excited.  Last year, we went to Seal Beach to see Drew's dad and his wife.  She couldn't go into the ocean due to very low B-cell lymphocytes as we had to worry about necrotizing fasciitis aka flesh eating bacteria.  So this was a big treat for her.





Irvine Park:
Party!  Did someone say party?!  The AT&T employees threw a huge Frozen party for Ellie at Irvine Park.  Complete with a bouncy house, train rides, unlimited pony rides and cupcakes, Ellie had a blast!




There was a surprised guest appearance -Elsa!  It was quite amusing to see Ellie steal the train engineer's microphone to "help" Elsa sing.





Anaheim, California:

Hilton Anaheim:
Again we are greeted by AT&T employees where Ellie receives a letter (and CAKE) from Elsa!  This Hilton is located near the Convention Center and Disneyland so there is a Disney store in the hotel.  Unbeknownst to Ellie, we were going to be attending The Wiggles concert the next day.  The Wiggles is the entire reason we ended up in Anaheim as they were only touring a few cities in California and 2 cities on the East Coast. We got complimentary breakfasts and they have Mickey Mouse waffles! Ellie decided to play with hers instead of eating it.





Rock And Brews:
Okay, they need to open one of these in Austin.  We happened to stumble along this place and decided to check it out.  The walls and entire ceiling were covered with artwork and flags of famous bands such a Hendrix, Metallica, Pink Floyd, Aerosmith, etc.  Music videos were playing on all the big screens and all the dishes are named after bands.  Andrew also took great pleasure in coloring.





Knott's Berry Farm:
TWC managed to get us VIP passes to this amusement park.  Similar to Six Flags, this park has all sorts of rides for kids and adults.  Bear pretty much spent 2.5 hours repeatedly riding the train, the little truck thing that runs on tracks (we had to try out each color truck), and the carousel.  She also discovered Snoopy and walked out of the park with all sorts of Snoopy paraphernalia and new, beloved rainbow Snoopy flip flops.  We had tickets to Soak City within the park, but Ellie Bear was going into that cranky tired mood.






The Rainforest Cafe:
Well, that was sort of a disaster.  Ellie was pretty tired at this time and she was refusing to leave the hotel room without her rainbow latex balloons with The Wiggles on them.  We told her she could bring one balloon.  She selected the red balloon and we tied it to the handle of her backpack with the balloon only rising 2 inches above the handle.

We didn't realize that the Rainforest Cafe was inside some sort of Disney Town that involved parking and security lines.  Andrew goes to park the car while Ellie and I get started on security.  As they search her backpack, the guy informs me that she most likely cannot bring her balloon into the Town. He says he will check with his boss after I prepared him for a potential tantrum.  As he radios his boss, Ellie has an epic meltdown because he is holding onto her backpack and balloon.  The poor, young man looks flustered and waves us through without even waiting for his boss' reply.  Then the metal detector woman tries to take the balloon away until I told her we were already told we could bring it in.  Seriously!?!?!  Who the hell takes away a balloon from a little kid!?!?!  And in a place that caters towards children!  It isn't like it was hurting anyone.

The meal was delicious and Ellie thought the elephants were hilarious - she was waving bye bye to them and then telling me that they were "sleeping" when they were no longer moving.



The Wiggles:
The Wiggles have been around for 27 years and the blue Wiggle, Anthony, is the only original cast member left.  Ellie was gifted a personalized backpack and personalized Wiggle's shirt just for the occasion.  We were granted backstage passes where the Bear nearly passed out due to the shock of seeing her favorite TV characters.  The roadie took about 20 pictures of all of us and in only one was she actually looking at the camera!  They all then sang her a song of her choice and Ellie chose "Do The Monkey", her favorite.  It was such a wonderful and unique experience for her.


The Wiggles: Emma (yellow), Lachy (purple), Simon (red), and Anthony (Blue)


Welcome home!
When we arrived at the Long Beach airport, we are greeted by our AT&T friends and they are bearing more activities for Ellie to bring onto the plane.  They assisted us with our luggage and we had no issues with security.  TSA pretty much checked the oxygen concentrator and that was that.  We had another exciting limo ride home and she was surprised by her friends and many of the TWC friends and their children at our house for a "Welcome Home" party.  Waiting for Ellie in the backyard was a surprise sandbox!




Andrew, Ellie, and I would like to thank all members of The Wish Connection Team for organizing such a wonderful trip for Ellie and our family.  It has been an amazing experience and an adventure that we will never forget.  We would also like to thank all of the companies that have donated items, tickets, meals, and upgrades during her Wish trip.  We will never forget all that you have done for our daughter.





 photo IMG_2291_zpsudykfi0h.jpg

Follow us on Facebook! https://www.facebook.com/pages/The-Chronicles-of-Ellie-Bellie-Bear/216738345037166

Caregiver Woes with the need to live forever and Fun in the Sun

I am a hot mess over here.  I do mean that in the metaphorical and literal sense in that it is hotter than Satan's. . . oh wait.  Kid...

Contributors