Continued Fear and Unparalleled Love

*I apologize in advance for some missing photos - I used Photobucket for free as a means to store my photos and they are now holding a few hundred pics of mine for hostage unless I pay for an expensive plan and I also managed to lose half my photos from my computer*


Ever since Ellie's ENT appointment last week, I keep going back to an old post of mine--Overwhelming Fear Over a Little Girl in a Pink Dress.  In the past 3 months, both of Ellie's ear tubes have fallen out and the right ear is already full of mucoid fluid.  Her hearing is affected.  She has suffered from chronic adenoiditis since January and they are obstructing her airway.  As are her tonsils. This means that next month, my little Ellie Bear will under go the trifecta of ENT surgeries--Tonsil removal, adenoid removal, and the insertion of ear tubes (her 4th set of tubes).

Oh you mean, these tonsils????
This photo was taken 1.5 years ago.  Those little bad boys have nearly doubled in size.  

I know that a T & A and ear tubes are minor surgeries, but they are still surgeries and this is my daughter!  Those old feelings of fear creep into my mind.  Paralyzing me.  I just want to hold my little girl close and protect her.

Overwhelming Fear Over a Little Girl in a Pink Dress
*a re-worked post from June 2012 with some new photos*

The Little Girl in the Pink Dress. . . Ellie Bear. . . My Love, My Life

My daughter is so beautiful that it hurts.  She is so amazing, so precious, and just down right sassy that my heart is over flowing with love for her.  How is it possible that she is my daughter?  She is a gift.  A priceless gift.  And I fear that I will lose her.  That she will be taken from me all to soon.

Is this something that all mothers feel?  Is this why mama bears are so ferociously protective of their cubs that they will kill a human or another animal that trespasses too close to their family den?

When Ellie was a little over 6 months old, when she went into anaphylaxis due to eating a small amount of infant oat cereal.  A surprisingly rare allergy.  I drove so fast to the nearest hospital and by the time I arrived, her little lip was swollen and she was gasping.  A high pitched squeak was released with each breathe.  I fear for her life.  I later on felt a chest crushing fear every time a little child walked by with a Cheerio.  A cheerio could kill her.  Those infant puffs could kill her.  Thankfully, she has outgrown this allergy.

When I watch my precocious little adventurer climb that 2-story playscape, I have moments of mommy panic.  What if she falls and breaks her neck?  Yet, I know I need to let Ellie develop her independence, test her boundaries, and practice her gross motor skills.

Every time I am in the car and I look back to see an empty car seat, I have a brief moment of fear. Oh right, the car seat is empty because I have a babysitter or she is home with Andrew.

Then there are those scarier times when Ellie has her routine blood draw.  Her complete blood count [CBC] is routinely measured to look for signs of leukemia.  A cancer that could ravish her body and could take her from this world, from me and Andrew.  A cancer, that while rare, is more common in children with Down syndrome.  Oh how my stomach drops and my heart freezes as I hear the nurse on the other line calling with the results.  Oh how my huge sigh of relief could be heard across Texas when I hear that "everything is normal".

Then in June, when I rushed Ellie to the ER at the recommendation of her pediatrician to rule out meningitis.  Again, adrenaline seized me and fortunately it all turned out okay.

Or just this past Valentine's Day, when my little spider monkey decided to sky-dive off the side of a chair, bonked her head, cried, stopped breathing, and then seized.  It was Ellie's (and my) first ambulance ride.  I stared in horror as I witness my baby continue to have absence seizures the entire way to the hospital.  Yet, again, her guardian angel worked over time for her.

Facebook and the internet are dangerous places.  Facebook and internet forums can be excellent avenues for support and yet, they are also where I learned about another little girl Ellie's age diagnosed with leukemia.  They are where I learned that a little cousin was in a horrendous car accident required multiple surgeries to realign her shattered bones.  It is where I saw my friend's little boy miraculously survive Steven-Johnson's Syndrome after having a rare reaction to an antibiotic.

I have seen too much.  It is my own fault for opting to work early on in my career as a pediatric intensive care unit nurse.  Many of the accidents and illnesses that I have encountered during my years as a nurse were rare incidents. They were unlikely and yet, they serve to remind me just how fragile life is.

This is my absolute most favorite photo of me and The Bear.  

I never knew it was possible to love someone so much, with every ounce of my being until I became pregnant. In those first few moments when I saw Ellie before the nurses whisked her away, I knew that life would never be the same.  Yes, I have a fear of losing my little girl and yet, it has made me forever grateful for each moment that I spend with her.  Tell me, am I the only one who has this fear?  Hold you little ones close and whisper those sweet words of I love you.

***

Yes, The Chunky Chicken does own quite a few pink dresses.

Part 2: Head Injuries and Seizures After a Fall

This is Part 2 to a two part series.  Part 1: When things go bonk, call an ambulance covers Ellie's accident



Now that I (and Ellie) have recovered from the initial shock of last week's head injury, blue spell, and grand mal seizure, I am finally able to sit down and actually write a more informative post about head bonks, post-fall seizures, c-spine precautions and atlantoaxial instability [AAI], and about remembering to list Down syndrome as a medical diagnosis.



Head bonks happen.  Children fall off changing tables.  They fall down stairs.  They climb over baby gates.  They scale walls. . . oh wait, is that just Ellie?  Anyway, falls happen.  It is a part of being a child. A right of passage into toddlerhood. Wipe away the mama guilt and the feelings of inadequacy.  It happens.  We cannot hover over our children with outreached arms 24/7.  It is not humanly possible.  Plus, there is that ever-so fine line of allowing your child to explore.  To gain independence.  Besides, that is what bubble wrap is for.

So we have established that kids fall.  The question is, when do you go to the pediatrician or even the ER?  If I took Ellie to the ER every time she bonked her head, we would be there every single day.  Literally.  I am not exaggerating.  Those who have met my spunky Ellie know that I am not kidding.

Signs your child needs to be seen by a health care provider after a fall:

• Loses consciousness
• Stops breathing
• Unequal pupils-the dark centers of the eyes should be equal size and get smaller when light is shined into the eyes.  
• Convulsions or seizures
• Vomits more than once
• Lethargy, difficultly arousing
• Blunt trauma / open wound /profuse bleeding that does not stop
• Difficulty walking or unequal movement of limbs
• Bleeding or clear fluid draining from the ears
• Slurred speech

Please note that the above signs may not occur immediately after the fall.  You want to watch your child closely for the first 24 hours.  If your child is due for a nap or it is close to bedtime, be sure to check on her frequently for the first few hours to make sure she is breathing okay, no color changes, and is arousable.  

If she is unconscious, try not to move her in case her neck suffered an injury.  With vomiting and/or seizing, carefully place her on her side, but try to keep her neck stable (yeah, I know, it is easier said than done.  With Ellie, I did not do such a great job on the stabilizing).  With seizing, do NOT attempt to place anything into the her mouth.

If an object is lodged into your child's head (scary, I know!), do NOT remove it. Yes, yes, I know you want to remove it and if your child is conscious, I am sure that she is trying to remove it as well.  Keep your cool and leave it in because removing it yourself may cause further damage.

Finally, when in doubt, trust that mama gut of yours and call the pedi.  If your child seems off to you or things just do not seem right, it takes just seconds to contact the pediatrician and ask to speak with the nurse as she can guide you.  

Which happened first?  Seizure vs. Fall

For Ellie, it was quite obvious.  She fell.  She screamed for a minute.  Then she had a tonic clonic/grand mal seizure--full body rhythmically jerking  (this is the same type of seizure Ellie had during a high fever).  However, in some cases the kiddo seizes and it is the seizure that caused the fall.  Occasionally, it is difficult to answer the question of which came first because the seizure appears to happen immediately upon hitting the floor or because the fall is not observed.

Then there are those tricky absence seizures. The child appears to be staring into space.  There may be mild twitching of the mouth or lip smacking.  The eyes may shift.   Additionally, atonic seizures produce an sudden loss of muscle tone.  The child just falls to the ground or her head suddenly drops.  Unless you are familiar with these types of seizures, they are hard to detect.  Nonetheless, a child may be hanging out on the monkey bars and seems to be paused in mid air and then falls.  Is she planning her next move or is she having a seizure?

Many times, children who endure many falls accompanied with seizing are evaluated for a seizure disorder.  Tests such as EEGs and CT/MRI scans may assist in diagnosing seizures and there are several medications that can help control seizures.

Above, I mentioned three types of seizures-grand mal, atonic, and absence.  There are several types of seizures and more information can be found HERE.




Why it is important to list Down syndrome as a medical condition and in the past-medical-history:

You have heard me say it again and again "My daughter is not Down syndrome.  She is a child who happens to have Down syndrome".  That still holds true, however, the fact remains that Down syndrome is a major part of her genetic make-up and there are several physiologic traits that my daughter possesses as a result of her designer genes.  The main ones being low muscle tone, loose ligaments, and small airways.  For some children, their list may include holes in the heart, hypothyroidism, or a history of heart surgery. These are important to know if your child is injured.  Moreover, if your child is ill (as in heading to the ER for something other than a fall), mentioning that your child has Ds helps the doctor zoom in on certain illnesses such as heart issues/infections, thyroid issues, diabetes, Hirsprung's disease, and leukemia.

Surprisingly, many health care providers may not even recognize that your child rocking an extra chromosome.  At 7 months old, I took Ellie to the ER for anaphylaxis.  She was hanging out with a hole in her heart, serious reflux, and, well, anayphylaxis.  The triage nurse did not realize Ellie had Down syndrome.  She just brushed past the medical history and said "no health issues" and proceeded to tell me that she is fine.  Meanwhile, my daughter's lip and throat were closing.  Being the mama bear that I am/was, I shoved Ellie's medical binder at her and said "she needs to be seen now!  she does have complex medical issues and this cannot wait".  The doctor got it, BUT the receptionist and then the nurse--the first two people you must get past to see the doc did not recognize Ds.

The same held true for our most recent ER trip.  The EMS had no idea.  It was up to me, as her mother, to state that Ellie had Ds and that as such she also has low muscle tone and needs C-spine precautions.  They assumed that my daughter was "a baby" because she is small when in reality she is 3.5 years-old!  C-spine precautions didn't cross their minds. Screaming and then later half-passed out, it can be difficult for someone unfamiliar with Ellie / or your kiddo to detect the facial features associate with Ds.

C-spine precautions after a fall and atlantoaxial instability in Down syndrome:

For me this is a big one because the American Academy of Pediatrics recently updated their health care guidelines for the child with Down syndrome.  In this new update, routine X-rays to screen for AAI are no longer recommended.  This means that your child could be walking around with AAI and then have a serious fall.  Add that to the low muscle tone and the loose ligaments and joints (see about section about why it is important to list Down syndrome in the past-medical history)and your child could have a neck injury (ie. join dislocation) to go with her head injury.

Photo courtesy of: specialneedsjudo.eu

This was actually the most interesting part of our EMS interaction.  Apparently, when the child is very young or very little, EMS uses a car seat to help stabilize the neck [C-Spine Precautions].   The car seat is strapped to the stretcher--the stretcher's belts are threaded through the car seat the same way you would install it in a care.  The neck brace is applied to the child and then the child is strapped into the car seat.  Foam padding and tape are further used to stabilize the head/neck.  In the picture above, Ellie is indeed sitting in her car seat. The EMS said that the added benefit to this method is that the scared child is in a familiar seat.  I will be honest with you.  Ellie was pretty out of it so I doubt she really cared about being in her own, familiar car seat, but I do understand what EMS was getting at!




*Disclaimer: this post does not substitute any medical information or advice provided by your child's pediatrician or other health care provider.  This post is a compilation of my education and experience as a peds nurse practitioner as well as my experience as being a mother.  A mother to a very active little girl who happens to have Down syndrome.  All medical questions and concerns should be directed to your child's health care provider.*-- A.T.



Resources for Parents:

"Head Injury ER Patient/Caregiver Packet." Loyola University Health Services

"Head Injury and Seizures". Epilepsy Foundation.

"Keeping Your Cool When Kids Bump Heads" KidsGrowth.com

Kids Health Parent First-Aid on Falls

"Seizures". Boston Children's Hospital

The Epilepsy Foundation

"Cervical Spine; C-spine; spine precautions". London Health Sciences Centre

"Atlantoaxial Instability". eMedicine.com

When things go bonk, call the ambulance: post trauma seizure

Actually, make that a loud THWACK!

Followed by screaming.  Which is good.  Probably not too injured.

Followed by sudden stiffening, back arching, choking, and turning a lovely shade of eggplant.

Add in a massive grand mal seizure.  That lasted for an eternity 30 seconds.


Er, not so good.  Possible brain injury?  A brain bleed?  spinal injury?


That is exactly what happened this past Thursday (yes, Valentine's Day) afternoon.  I would like to tell you that it all happened in slow motion, but it didn't.  It was fast.  Very fast.  Miss Leslie and I were in the kitchen with Ellie getting ready to begin our ABA therapy session.  Ellie was being her usual self.  Climbing.  She always climbs.  She is surefooted.  The climb wasn't the problem.  The climb didn't cause the fall.  What caused the fall was Ellie thinking that she could dive off the side of her booster chair and not get hurt.  She still thinks that she is invincible.  Or that she is made of rubber and will bounce.

This is the evil, horrible chair that she fell from (estimated that she fell 4 feet).

Oh  why did we have to have a taller than average kitchen table and chair set?

Miss Leslie and I watched in horror as she turned to the side and started to lean precariously over the edge of the booster seat.  Almost as though she wanted to look under the chair.  Or dive into a swimming pool.  I was right there.  Right in front of her.  I knew it was going to happen and I was not fast enough.  I wasn't able to stop it.  I wasn't able to protect her.

Toddlers are top heavy.  She catapulted off the side of the booster and somersaulted.  The Bear did a flip alright.  It was not graceful and her landing sucked.  Big time.  She fell about 4 feet and hit the back portion of her head and lower back on a very hard Brazilian Walnut floor (this is a 0.5 inch floor of solid wood so it was hard).  She immediately cried which is usually a good sign.

The thing is, Bear has fallen before.  All kids fall.  Usually, Ellie doesn't really cry.  She just gets pissed off that I am holding her and thus preventing her from re-climbing whatever dangerous thing she was scaling be it the cabinets, bookshelf, or the wall even.  This was different.

She screamed and screamed.  I was cradling here.  Holding her.  I knew it was big fall, but I didn't think it was that big.  I wasn't worried.  I figured she would bounce back.  Until, she suddenly arched back and started making choking noises.  Gasping.

She turned blue and started to rhythmically jerk.  Her full body.  She was arched back so I couldn't see her eyes.  I look at Leslie with shock.

Shocked Mama Bear: "Is she?"

Shocked Miss Leslie: "yes. yes she is.".

I lay my daughter onto the floor and try to stabilize her spine.  My heart is beating so fast that I am certain it will explode.  Leslie is on the phone with 911.  They are asking for my address.  I stared blankly at her.  I said something.  I think I gave the correct street address, but I also think I gave my old zip code.  The one in Philly.  There is a reason that they do not let healthcare providers treat family members.  All reason goes out the window.

I was getting pissed off---can't they trace the call?  Can't they find us?  My baby is injured.  Seriously injured.  Pissed off and panicked, I was obsessively checking my little girl's pupils.  Perfect, they were perfect.  She had resumed screaming.  That's a good sign.  Right?  Right?!?!?!

Andrew!  I needed to let Andrew know!  Except, the one time my hubby forgets his cell phone was that day.  On the freaking kitchen table.  I frantically text his work buddy:

Andrew now. ellie fall seize 911 ambulance.

Thanks goodness, TC was working at home.  Thank goodness, TC found my hubby.  Thank goodness, TC and hubby understood my shorthand.  Andrew was headed home.

While waiting an exceedingly long time for the ambulance that was just literally around the corner from us, Ellie waved.  Yes, she waved to the ambulance.  Whew!  It was going to be okay.

Then I opened my mouth and started speaking medical jargon.  Let me tell you how much that throws off EMS.  More on that later.  They asked me for her carseat.  I bewilderly thought "oh crap, they they they expect me to drive her to the hospital.  They are leaving us?!?!"  I suppose my panic showed because they calmly explained that they needed to the carseat to help place her in C-spine precautions.  I just gaped.

Confused & Dazed Mama Bear: Carseat.  Yes yes, the carseat.  Very good.  

Freakishly Calm EMS: Mam, the carseat?

Lost.  I was completely lost.  I couldn't figure out where the carseat was.  Or how to even tell Leslie to get to it.  I just mutely handed my keys to Leslie and muttered something about garage and car.

After finally getting The Chunky Chicken into the ambulance, my husband shows up.  Yeah, that is how slow EMS is folks.

EMS had to get a little inventive with the C-spine stabilization

The entire ride to the ER was nerve wracking.  Ellie was all bundled into the stretcher and the pulse ox will not pick up her oxygen sats or her heart rate.  I finally reapplied the pulse ox myself and bingo, baby girl was satting just fine at 96% yet her heart rate was high.  She had a flat affect.  Just staring.  She was silent. Gone were her screams.  I longed to hear those screams.

She started having absence seizures.

I was holding her tiny hand so tight it was turning purple.  I was calling out "Ellie, it is mama" and waving my hand in front of her face.  She just stared with the left side of her lips twitching upward.

Then, she would be back with us and wave to the cars she could see out the ambulance back window.  She continued to have these absence seizures the entire ride there, but when she would come out of these episodes, she would say her name is "E" and wave to the cars.  Pupils looked great.  She was breathing.  She was moving her arms and legs.  Yet, she wasn't herself.

Visions of her eyes rolling back, or a blown pupil, or having to perform CPR danced through my head.  Why hadn't that EMS guy put an IV in her arm?  Why is he just sitting there? I wished I wasn't a healthcare provider.  I wish I never worked that stint in a PICU.  I know too much and I jump to worst case scenario.  Thankfully, my worries came to naught.



Bear's case was considered non-urgent because she was breathing, awake, and not bleeding (these are good things!.  We waited over an hour for the doc to even come in.  Another hour to get the CT scan of her head and neck.  Two more hours to get the results.  Thirty more minutes after we were told we were going home to get the discharge paperwork.

During that time, in the beginning,  Ellie continued to have a few more episodes in which she would have eyes shifting to the left coupled with lip smacking or the left side of her mouth twitching.  They grew further and further apart until she had none the last 2 hours.  The ER doc was adamant at first that she must have an underlying seizure disorder until I mentioned she had a clean EEG performed by Dr. G a few months ago after a febrile seizure/meningitis scare.  He finally conceded that these absence seizures were probably related to the fall given that they decreased and then stopped all together.  Yet he did advice that we watch her closely.

The ER doc unstrapped the C-spine collar and asks Ellie to walk.  The stinker turns right around and climbs the chair and then the stretcher.  Andrew and I were told that she is fast.  All I knew was that my Bear, who just aged me 20 years, was fine.  She was just fine.



This is the end of Part 1.  Part 2 will cover the following:

Post Traumatic seizure: Which came first?  The seizure of the fall?

How do you know when to proceed to the ER after a head bonk?

C-Spine: Down syndrome and AAI

Why it is important to include Down Syndrome in your list of past medical history.