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's blog.  Just know that it is ridiculously hot and that I could cut the air with a knife given the extreme humidity and I could fry an egg on the hood of my car.  Or driveway.  We were able to escape the heat last week as we took a family vacation to Seal Beach, California. The weather was beautiful and cool.  Ellie enjoyed frolicking in the ocean and we had a great time visiting the Santa Monica Pier and returning to Irvine Park.  Last year, The Wish Connection sent our family to California and hosted an event at Irvine Park.  I guess Princess Twinkle Toes of the Turkey Bears made quite the impression because the train conductor remembered us!  Actually, he remembered Andrew and Ellie and especially the part where Bear stole the microphone from Princess Elsa and started to "sing" on the train.

Riding the train at Irvine Park

1 year ago at Irvine Park

One of my greatest fears and greatest desires is quite morbid, but I am going to try to explain the best that I can.  My greatest fear is to lose my daughter and yet, my greatest desire is that I outlive her.  Now I mean this when she is close to 60 years-old (this is the average life expectancy of a person with Down syndrome in the USA) and I am in my 80s.  My greatest fear is that she will out live me and end up not getting the care and love that she needs.  That she will end up in some unlicensed care facility where she is neglected both medically and emotionally.  That she is all alone.  The idea of this happening causes me great anxiety while at the same time, the thought of losing her cripples me.  

The past few months have opened my eyes a bit and have resulted in me having a new goal.  Yes, what is it about these goals that I have no control over?  Not only do I need to live forever, I need to be healthy - both physically and of sound mind.  There are people in my family who have lived to be over 100 so longevity is entirely possible, but there are also those who died "youngish" (80s is young, right?) and had dementia.  These past few months have been trying and made me realize that I can try to eat healthy most of the time and work out, but I can still suffer from illness.

With the exception of my annual physical and a fair number of visits to my sports rehabilitation doctor for my spinal issues a few years back, I have been to the doctor more these past few months than in the past 10 years combined.  I had a whole slew of nonspecific symptoms that I ignored for a while as I was chalking most of it up to stress and later my neck issues.  Nurses really do make the best patients!  

I was suddenly sleeping 10 hours a night and taking on average, two 2 hour naps a day.  I also had malaise which is where I felt blah, just not right, and almost like I was coming down with the flu. I assumed that the fatigue and malaise were initially due to stress.  Up until early March, the Bear was having major psychiatric issues, self harming, and multiple doctors' appointments.  It was stressful and I had trouble making sure I was taking care of myself.  I have a history of having that extreme fatigue where it would last a few weeks a few times of the year.  So I ignored it.  Only 2 weeks turned into 3+ months.

During this time, I was having excruciating headaches that would only disapate with laying down.  They were odd.  It would start on the left side, the back of my head and then travel up along the back side of my left ear while looping around my forehead.  I was also having some radiation down my left arm and I had significantly decreased mobility of turning my head to left.  I have a history of cervical spine stenosis (where arthritic vertebrae push into the spine cord and surrounding nerves) and I just assumed my steroid injection from 3.5 years ago wore off.  So I requested a script for physical therapy and unfortunately that turned into a disaster after just one session.  I've had vertigo (the sensation of spinning or dizziness) for a long while now and I just assumed it was orthostatic hypotension which is where your blood pressure drops when you go from sitting to standing too quickly - many people call it a "head rush" only after physical therapy, it changed.  I started to have vertigo while sitting, with various head movements bending over, etc.  Again, I attributed this to my neck. The fatigue, headaches, and the vertigo led me to no longer working as a substitute school nurse and I was having to depend on Andrew to take off work to drive Ellie to some of her therapies.

With the vertigo - I couldn't even watch her on the carousel with nearly falling over and extreme nausea let along ride it with her.

The thing is, whenever you have a whole bunch of vague symptoms, you tend to think it is one issue. . . not multiple.  I got in to see a new sports medicine doctor who told me that the vertigo was not from my neck and to see my PCP for the fatigue.  I then started a round of doctor roulette.  I've had a ton of blood work to rule out anemia, hypothyroidism, Vitamin B12 deficiency, electrolyte imbalance, Lupus, kidneys issues, etc (that isn't everything but you get the idea) and then a neck and a brain MRI.  I finally got a steroid injection into my neck which helped with my head/neck mobility and the pain down my arm but did nothing for my vertigo or headaches.  The fatigue and malaise suddenly went away and I don't know if it is related to the fact I had to take high dose steroids before getting IV iodine contrast or if it was just a flare up of something, but I am not complaining!!!  I am currently seeing a neurotologist - a neurology ear doctor- who specializes in vertigo.  There is still some testing, but it looks like it is related to BPPV or benign paroxysmal positional vertigo, benign/idiopathic intracranial hypertension (hence the headaches, vertigo, ear issues but I am not totally sold on this diagnosis), and possible a temporal bone issue at one part of ear as seen on MRI. Basically, I am a hot mess, BUT things are finally getting better. 

So all of this brings me back to my greatest fear.  It is one thing to say I need to live forever so that I can care for Ellie, but what happens if it is me that needs to be looked after?  

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

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.

About The Wish Connection

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.

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