"Life Threatening Events"

Ok, so long time no post.

Sorry about that but things got pretty busy

and I have struggled to find the time.

Things were going pretty well for a while!

We went two WHOLE months without a hospital visit.

Lily was/is still struggling with her rash,

but she made HUGE progress in eating!

About six weeks ago we started her on the new medicine for

the pain associated with her V.H.(Visceral Hyperalgesia)

And after two weeks of being on it she 

started eating and eating and eating!

She made progress in leaps and bounds!!

She was eating up to 2oz of puree's

 in ONE SITTING!!!

Plus she has been doing the signs for

"more" "food" "please" 

and stringing them together!

And she was asking for more of her bottle when it was empty!!!

She even was accepting some puffs and happily eating 10-15 of them!!!!!!!!!!!!!!!

I got so excited that I started imagining her weaning off the g-tube in a matter of months! 

Ha ha ha

What a vivid imagination I have!!!!

Silly silly me.

Then we decided to go to walmart.

Dun, dun, dun!!!!

Now its not exactly
Walmart's fault

its just happened to be where we were and I now associate Walmart with the following event.

She started acting fussy.

weird fussy.

Lily was with Shaun and I had gone to another isle.

Then she started crying/wimpering a weird cry so I made my way back over to 

Shaun and her.

He had just set her down in the shopping cart when I walked up

but I picked her up cause she was acting odd.

Then out of nowhere she arched backward so forcefully and stayed bent backwards.

She went rigid and her arms bent backwards in an odd way.

Her mouth was opening and closing like she was trying to breath

And

SHE WASN'T BREATHING.

I watched her panicked eyes as

 her lips, then mouth, then face turned blue.

Her eyes then rolled back in her head

 and she passed out.

I started yelling "she's unconscious shes not breathing!"

I shook her and smacked her back and was just about to lay her down for CPR

When she took a breath and woke back up.

The whole thing was only about a minute but it felt like 20! 

It was only then that I became aware of the shoppers standing there staring...

We noticed her legs were blue and stayed that way for 10 minutes or so afterwards.

We went to the hospital.

They said it was most likely a seizure

And they weren't gonna worry about it and sent us home.

(not worry about a seizure?!?!?)

We were there barely an hour!

The next night my brother and I went out to Sushi

and Lily was happily playing and eating her puffs in the industrial wooden highchair they provided.

She was blowing kisses and saying "Hi" to EVERYONE in the restaurant. 

The waitress was commenting on how she was the cutest kid she had ever seen.

We had just finished eating when she

 arched back (with enough force that she broke the industrial high chair straps)

I couldn't straighten her and it was difficult to get her out of the highchair

And she was trying to breathe again but couldn't.

I stood up

and started crying

All I could say was 

"Not again, please not again"

She went blue and passed out.

I ran to the car as My brother payed the bill

She woke up and cried and cried and screamed

She was completely disoriented and didn't seem to recognize me at all.

 We drove to the ER which was directly across the street from where we were.

(It would have taken longer to call 911 and wait for the paramedics)

 As we pulled into the ER she stopped crying

We went inside and she started 

giggling and babbling at the fish in the tank!!!

The ER attendant looked at me like I was crazy bringing this

Happy giggling girl in there

(until i explained of course)

We then got to have our second ambulance ride

It was a LONG ride there and she was stable and sleeping so

I had the presence of mind to take a picture

But ambulances are SUPER bumpy

And my new phone camera isn't that great so this is the best I could get...

 we were transported to PCH

They did the "normal" labs they always do for her.

The good news was her white count was normal!!!

(for once)

She had an EEG,

  it was normal,

 Which rules out most kinds of seizures.

She then had an MRI.

It has to be done under anesthesia

which is very dangerous for her

but It went beautifully!!

We had an AWESOME anesthesiologist

and she woke up happy and giggling!!!

In this last one she was "singing" and trying to dance but was 

super loopy and couldn't even lift her head

It was hilarious!!!

The MRI was also normal.

So, they monitored us a bit longer in the hospital

and then sent us home.

We were there only 3 days.

After talking with the Neurologist, Pulmologist, And Gastroenterologist they are confident

they know what happened.

They believe Lily's sandifers syndrome/GERD

has become so severe that she is

aspirating the stomach contents

which is aggravating her already problematic

larynx and esophagus

and causing Laryngeal spasms .

Meaning her vocal chords are freezing up and she has to pass out in order

for them to work again...

If a persons vocal cords freeze,

It is impossible to breathe. 

After talking with her GI today

who spoke with 2 pulmologists, her SN PCP,

 and another specialist that I wasn't familiar with the title for...

They all agree that because of these

"life threatening events"

(that will only continue and probably get worse)

Lily needs another surgery.

A Nissan Fundoplication or "Fundo".

There is one more extensive test they will do first

where they will put a probe down into her stomach and monitor

her for 23 hours in the hospital.

Then depending on that test we will be having the surgery.

The "Fundo"  is when the top of the stomach is wrapped

around the bottom of the esophagus

making vomiting impossible.

You can see how its done here...

If  nothing can come back up out of her stomach this should stop 

these laryngeal spasms.

Our GI said she has only recommended a Fundo to 4 other 

patients in her 15 year career.

Fundo's have widely become thought of as

"outdated and unnecessary UNLESS severe aspiration is causing life threatening events"

which in Lily's case it is...

This also means she will

ALWAYS need her G Tube.

It Means she will probably significantly regress in her eating skills

as she will have to not eat anything by mouth for quite some time.

Because of her EoE,

She is also HIGH RISK for many complications like 

tearing the esophagus or stomach ,

internal bleeding, etc..

I am discouraged about it,

but at the same time I  am grateful that this technology

is available,

because holding my daughter in my arms while she is blue and unconscious is

HORRIFIC!

And I hope it NEVER happens again.

So, with that said...

Bring on the Fundo!!