Sometimes I wonder why they even bother to send us home...

I apologize for the LONG time in between posts.

Things have been busy.

I try to update our FB Life with Lily page daily though

http://www.facebook.com/pages/Life-with-Lily/311949542190053 

So basically we had two blissful weeks at home.

And then we decided to feed her.

When I say decided to feed her I mean we were approved by all her drs to feed her...

And She LOVED the 1/2 oz of thickened formula she ate by mouth.

But within hours she began to not tolerate her feeds.

She started having diarrhea.

She lost all energy.

Then because her Fundo has failed she started vomiting.

I was hoping it was just a flu but the last time we tried to feed her by mouth

this EXACT same thing happened.

I tried everything I could to help her at home but she kept getting worse.

We had to take her in. 

Withing 10 minutes of being in the ER they were admitting her.

Then while we were sitting in the Er 

Lily just randomly passed out.

She was just sitting there then she was arching her back and went completely ridgid

her eyes rolled back and she lost consciousness.

This seemed similar to some of her earlier events but she didn't stop breathing.

I yelled for help and people came running.

They said it looked like a seizure.

We were admitted for stay #23 on Monday Nov 5th

 They did an EEG to see if there was any sign of seizure activity.

The EEG showed some slowing of her brain waves wich

"might or might-not mean it was a seizure"

They decided they wanted to just wait and see if she had another one...

Also,

The Drs didn't believe she 

"wasn't tolerating" and decided she just had a stomach bug.

(whatever happened to that note that was supposed to be in her chart that said to listen to mom? They told me 4 or 5 stays ago that they would listen to my instincts and have me be a part of the "team"...

I guess since she has a trach now all that's changed?)

They put her on IV fluids for a couple days then quickly raised her feeds back to her goal rate

 of 43ml an hour for 24 hours a day.

And by Thursday morning we were going home.

I Told them we would probably see them again in a day or two when she started not tolerating 

but they still believed it was a flu and she was fine now.

I let their optimism carry me home.

I mean their arguments made perfect sence.

(if I ignored her past history AND believed in CRAZY coincidences)

And It COULD have been just a flu...

She got home and slept for 18 hours straight.

(something that would NOT have been possible in the hospital so maybe

 we went home just for that reason)

Then she woke up and the vomiting started again...

It was just twice on friday morning and again in the afternoon.

The diarrhea was gone so she wasn't getting dehydrated 

and I really wanted her drs to look at her monday in their clinic

instead of have whatever Dr was on call making decisions based

 on their brief skimming of her HUGE file.

But On Sat Morning her stomach wasnt emptying AT ALL and the vomiting was 

so severe and she was vomiting out of her trach as well.

Vomiting out of her trach is a BAD sign it means its going into her airway.

So Saturday We went BACK to the hospital. 

For stay #24.

 And thats where we are now.

She is back on IV fluids and the idea is to slowly raise her feeds and see where she 

begins to stop tolerating and go from there.
And we just have to wait it out
and try to keep Lily occupied...

Shes not happy about being here again!

The Trach

Lily has a Trach.

It still feels a bit surreal.

When She is awake and active and looking at me with those big blue eyes

it seems to have already become a part of her,

almost natural.

I already am forgetting its there (kinda)

But...

When she is asleep or I get out of the room for a few minutes alone

It hits like a TON of bricks.

I don't know why getting the Trach has been so much harder (for me) than all the other surgeries combined.

For Lily, it seems to have been the quickest recovery,

with surprisingly the least amount of pain.

But for me this has tilted my world on its axis.

I don't know if its everything building up and the trach is just the straw that broke the camels back,

Or if its all the social stigmas that come with the trach,

 Or the reality of how much having a Trach will change our already medically complex lifestyle

Or if its just terrifying because its her airway and it is DANGEROUS.

Probably a mixture of all of the above.

But, 

I do know that this was the Right decision.

She is now having multiple airway closing events a day

and they are MUCH longer than ever before.

But because of the trach she doesn't turn blue or pass out.

She is able to keep breathing because the part of her airway that collapses is above where the trach is.

The Trach came at exactly the right moment. 

If we hadn't gotten the trach when we did, 

She would most likely be gone by now, 

or at best have some serious brain damage.

The Lord works in Miraculous ways 

and I know he is working miracles through My Lily girl.

And then also there is the Miracle of her voice.

She SPEAKS!

The Nurses and Drs are baffled.

I know its because of all the faith and prayers of those who love her.

Before Lily, the earliest a child had spoken after receiving a trach was 1 week.

Lily spoke after 12 hours.

She woke up the next morning after surgery looked up at a balloon and said

"ELMO!"

and I was too amazed to even cry but then she looked at me

and said

"Mom, Mommy, mommy"

And as I went to pick her up she looked at the 

nurses and Dr and pointed her finger at them

(as if they were in trouble)

and said 

"No, no, NO!"

Not only did she still have her voice she still

has her spunk!

This Picture was taken about 18 hours after surgery

And she is SMILING!!!

She was in the ICU for only 5 days after surgery instead of the standard 7

but 

She still wasn't tolerating feeds.

So being faced with TPN at home yet AGAIN...

We tried something a bit different.

Her Gi suggested injecting Botox into her pylorus

(the muscle at the bottom of her stomach)

It meant more anesthesia, but we had to try.

And so far it has WORKED!

She is finally at goal feeds.

No pain 

No shaking 

No screaming.

However, 

there are still complications.

The anesthesia sent her into a metobolic crisis.

Her heartrate soared to the 200's, her respirations tripled, she developed tremors

 and she spiked a fever. 

Slowly her respirations returned to normal

 and her fever subsided but her heart is still higher than it should be.

But all in all, it looks like she is pulling out of crisis mode...

Also,

When they went in to inject the botox.

they noticed her fundo was ripping out.

And once we got to goal feeds,

 she started refluxing her food and then aspirating it.

They way we know this is,

 her stomach contents are leaking out of her Trach.

This is bad news as it is a guaranteed  way to get a pneumonia.

So we are messing with the rate and volume of her feeds to see if we can find a happy medium

that will allow her to get her full nutrition/hydration needs but keep her stomach calm enough so she stops refluxing and subsequently aspirating.

And then yesterday her trach started bleeding again.

Just small amounts,

but it shouldn't be bleeding anymore.

I am afraid we are headed for yet another surgery to fix the Nissen Fundoplication.

But we will cross that bridge when we get to it.
We will be in the hospital
AT LEAST another week and,

As for now,

I am just so greatful that

the Trach is doing its job of keeping  her breathing and ALIVE.

This video is of Lily speaking with the trach and it also shows what her trach looks like 

without the mist collar attached 

(the blue tubing with the clear mask in the other pictures)

So NOW they finally take me seriously...stays #18 and 19

So I haven't blogged for a while.

Things have been...busy...

So let me catch everyone up on the past month.

On June 30th we were finally approved by Lily's Dr's to fly so we flew up to Utah.

Shaun's sweet Grandma was dying and she wanted to meet Lily before she died.

So We jumped on a plane and made the short hour long flight to SLC.

Lily did great on the plane, and I was very excited about it.

We drove straight to Grandmas so we could see everyone.

And it happened again.

 

She stopped breathing.

 

Turned blue and passed out in my arms.

 

Shaun took her laid her on a bed and started CPR.

But the rescue breaths couldn't get passed her throat.

Something seemed to be blocking her airway.

So he did some chest compressions 

Which did the trick. 

She started breathing and woke up.

She cried while I just cried and held her.

(I am so glad Shaun had JUST renewed his CPR certification the week before)

We called the Drs back in Phoenix and they decided it was probably just an isolated incident

due to the change in pressure and altitude from the flight.

And once she stopped crying she was fine.

(I must admit, I started to second guess myself and wonder

if this was just a "breath holding spell" and not laryngospasms despite the fact that her airway seemed to be blocked when Shaun was giving CPR...

but more on that a bit later)

We had a nice visit and it was GREAT to get to see family.

Although it was heartbreaking to see Grandma dying, 

We were so glad Lily got to meet her, 

and everyone else she hadn't had a chance to meet yet!

On the 4th of July we went to a park for a BBQ

and Lily had her first taste of playing in the sprinklers.

The next day We went to a birthday party for Lily's adorable cousin.

At this party her diarrhea became much much much worse.

In the next 28 hours she had more than 20 diapers.

She was hurting. 

We had to take her to the ER.

Luckily there is a Children's hospital in SLC.

Most typical hospitals aren't equipped to deal with 

Lily's "complex medical nature" even those with pediatric wings

And so we were very fortunate to be near a children's hospital 

where they had the tools and knowledge to be able to accommodate

to her needs

(IE: the pediatric sized port, and g-tube)

We got to the ER and she was dehydrated

( No surprise there, who wouldn't be after diarrhea like she had?)

But she was also significantly anemic, 

and her blood sugar was 50,

which is low but not horribly low.

An ideal blood sugar for her would be between 80-110.

(remember that for later)

So they admitted her.

Primary Children's Medical Center is a great facility.

Even though it is TONS smaller than PCH,

I almost liked it better.

The Doctors were very respectful and it was nice to

get some fresh eyes to look at her and find some things we had been missing

(like the anemia, and possibly the blood sugar)

We were there for only 3 days.

Just long enough to get her stable enough and filled up with fluids

 for us to make the drive back to Phoenix.

We had to drive back because they said Lily shouldn't fly again because she had stopped breathing

just hours after getting off the plane.

On the way back to Phoenix

we stayed the night at Shaun's old friends house in Saint George.

That night Lily started holding her tummy and saying ow

So I vented her like I always do when she does that

and I got this out of her tummy

yup that's blood mixed with her formula

And this picture only shows part of it.

There was more all along the tubing and I had to fill 2 syringes because there was so much just sitting in her stomach.

All in all, I probably vented almost 4 ounces out of her tummy all mixed with blood.

The good news was after we talked to the Dr's they thought it was safe enough to bring her to Phoenix the next day and get checked out.

So that's what we did. 

We drove the rest of the way the next morning and Lily did great!

 And even better I didn't see anymore blood all the way home!

 

The Dr's back at PCH didn't seem to concerned when they saw her and they ended up sending us home

without having to admit us.

 

About a week later I vented blood from her stomach again.

I called the Dr, who called another Dr, 

who then called me and said they wanted to admit her for a BUNCH of testing.

I must admit, I was in a Circle K holding Lily when they called me.

I had just left the funeral of an old dear friend so I was already emotional,

But I totally embarrassed myself by bursting into tears in the middle of the store.

I just am tired of having 

SO MANY HOSPITAL STAYS.

And I hate that this is so hard on my sweet little Lily.

We got admitted around 4 on a wed, which meant nothing would really happen until the

next day except for xrays and some blood work.

Thursday also brought more sitting and waiting.

Friday morning we were scheduled for three different scopes and 

ANOTHER EEG.

Lily had been acting odd all morning on Friday but during the EEG she really started to scare me.

She was pale, and couldn't even sit up on her own, I had to hold her up.

Her eyes kinda glazed over and she stopped responding to my voice.

Here eyes were open but it was like she wasn't there.

 

I told the lady I thought something was wrong, but she said she was  just tired.

I then told another person that Lily was acting weird and was really scaring me

and they ignored me as well.

It wasn't until we got back to our room,

and her AWESOME nurse came in that someone listened to me

The nurse immediately took her blood sugar and she was 21!!

She called the Dr's and started giving her some emergency meds.

They were saying they didn;t know how she was still consious,

that she could slip into a coma or a seizure at any moment.

 

she had only been given 10% of the recommended dose of medicine

when they checked her blood sugar again to make sure it was rising...

It had jumped up to 385!!!

So they brought in another specialist.

Endocrinologists.

The regular Doctors also came in and sat down with me and told me that they were 

sorry I wasn't listened to before and they have it in my chart that

I am to be listened to, that I (as her mother) am good at reading the subtle signs of distress 

and that I will be taken seriously from now on!

 

BOO-YAH!!!

Anyways,

They now had to do a bunch of tests to figure out her new blood sugar issue before we could even think of going home,

but in order to do the tests her blood sugar had to drop again.

So We had to take her off her feeds and check her blood sugar every 1/2 hour until it dropped.

After a while she became dehydrated and stopped bleeding as much so they had to poke her 2-3 times every 1/2 hour.

By the next morning she had had 35 pokes throughout the night 

and her poor feet were stained in blood.

I HATED allowing them to do it, but we had to know how to treat the blood sugar issue

before we could go home.

Blood sugar issues aren't something to mess with.

Then because of the blood sugar issues we had to postpone the scopes that she had scheduled

until the following Monday.

 

She had three scopes planned.

An EGD(stomach scope with biopsies),

a sigmoidoscopy (rectum scope with biopsies),

and a bronchoscopy (lung and airway scope with biopsies).

 

So apparently during the procedure

(after she was asleep but before they had begun anything else)

She stopped breathing again.

Because they saw it they confirmed it was a laryngospasm.

The anesthesiologist left claw marks on her chin from where he had to

hold the oxygen mask on so tight and FORCE her airway open.

He said while it does happen while people are under anesthesia,

It was the quickest one he had seen,

They now have NO doubt that these events she has been having 

ARE LARYNGOSPASMS.

And I don't have to second guess myself either.

They said her larynx is incredibly touchy and it just likes to spasm shut at the slightest irritation.

They then proceeded with the scope and found out that she had

"large amounts of frothy liquid" all throughout her airway and into her lungs as well.

The tests on this "frothy liquid" are still pending, however they believe it is stomach acids

and that she is refluxing past the fundo

(which isn't supposed to be able to happen)

Anyway, she has a lot of liquid in areas it shouldn't be and that's a big concern.

 Then after we got her safely back in my arms and back into the room last night, she spiked a fever

then her heart rate rose to the 200's and her oxygen kept dropping.

She finally stabilized after a few hours and has been stable ever since

So that's where we are now,

just sitting in the hospital 

waiting for test results so

they can know how to treat her and where to go from here.

I do know we will now be checking her blood sugar at home regularly,

and we get to have her back on our "good friend" the apnea monitor while she is sleeping.

(she was on an apnea monitor until she was 11 months old)

Tomorrow we should start getting some test results.

They believe that she was/is in a "metabolic crisis"

which is unfortunately a part of Mito,

But it often means the disease is progressing.

I hope it never happens again...

Honestly I hope she never ever ever has another symptom again.

I wish it would just STOP.

It hurts my heart that she is only 18 months old

and has had 19 hospital stays.

But she is a fighter.

She has such a happy spirit and she is so strong willed.

She LOVES life and it shows.

playing peek a boo from her princess castle hospital bed

happy girl minutes before going back for the scopes

You would never know she had stopped breathing on an operating table less than 24 hours before this was taken

 You would never know from just looking at her

that this little angel is fighting for her life.

She is so strong.

I admire and respect her strength, her spirit.

I LOVE HER!

 

 

 

Last weeks surgery and hospital stay

On Easter night, 

as my home was full of family,

it happened again.

In front of everyone 

she turned purple/blue,
stopped breathing,

and passed out.

I was told to email my doctor if/when it happened again.

So I did.

The called me Monday morning and said they were admitting

us for a 23 hour Impedance study.

Well we get there and waited and waited

and they told us they wouldn't be starting it until Tues morning!
Ugh typical hospital "Hurry up and wait"...

So Tues morning came and they took us down to place the probe.

It had to be done under anesthesia because of the risk of
causing another ALTE
(Apparent Life Threatening Event)
To read about these see my post here

Again she woke up relatively happy from anesthesia.
The probe looked just like an Ng tube
except it was attached to a small digital box
That Had different buttons for eating, sleeping etc.
The probe had to be in for 23 hours.
 Later that night as I was TRYING to put her to sleep
 I realized my shirt was all wet.
It turned out
 her port was leaking!!! 
To read about what the port is go here 
I tried not to freak out and called the nurse
(who did freak out :) and came RUNNING )
And we discovered it had infiltrated into her skin


 See how swollen and puffy it was

 

This is what her port looks like when it isn't swollen

this one really shows how puffy it got

yes another pic of her swollen port  but shes cute in it sooo I had to put it on here :)

  It didn't seem to bother her though...
The problem was we had to re-access it to lock it with
a solution called Heparin
 so it wouldn't clot up.
They tried and it
Wouldn't work
Her port wasn't working AT ALL!
They couldn't flush it or get any blood return.
So They called the Iv team to come and try.
If this didn't work she would be having port surgery asap.
After an hour of holding her down while she screamed
(It was already midnight by then)

They finally got it to work.
Whew! no surgery!!
Well, at least not on her port...

It took a while to get the results of the study
and so we just had to wait...

waiting in the hospital can seem like time is standing still...

When the impedance study results came back it did show,
that despite being on the highest doses of reflux meds possible,
She was still refluxing significantly.
They wanted to do the Fundo before we left the hospital.
The thing was that there was
NO GUARANTEE
that it would stop these events.
We saw three different surgeons, Two GI's, a pulmologist, And many other resident and
attending Doctors
They all recommended the Fundo after seeing the study results.

We had a decision to make.

Listen to the doctors and risk putting her through surgery that
might not work

or

don't do surgery and hope these "spells"
just go away or at the very least don't get worse...


They told us on Wed and scheduled the surgery for Friday morning.
I felt sick.
I did not want her to have surgery.
I wanted to pretend nothing had happened.
What if these were the only spells she would ever have?
What if it wasn't caused by laryngeal spasms?
What If we didn't have surgery
and the next time it happened she didn't start breathing again?
The "what if's" were weighing heavy on my mind.
But every time I closed my eyes I could see her
Blue and limp, seemingly lifeless in my arms.

We couldn't make this decision on our own.

Naturally we prayed,
 A LOT.

Thursday evening we still weren't sure what to do.
So all three of us went down to the chapel in
The hospital and prayed.
Shaun and I both felt an overwhelming peace
and the comfort that this surgery was what we should do.
As soon as we had our answer
my heart felt calmer,
Yes, I still feared for the pain and suffering
that naturally comes with any surgery
but I trust The Lord,
So, since I knew this was what He wanted,
I felt a HUGE burden lifted from my shoulders.


The surgery took 3 hours.

They were telling me there was a good possibility
that they wouldn't be able to do it laparoscopically
and would have to completely open her up.
It worked out so they were able to do it laparoscopically,
with NO COMPLICATIONS.

The Lord had blessed us!


She was miserable for the next 2 days.

 A friend brought her this doll with changes of clothes and all she did was hug it!
and ask me (through signs and gestures) to change its clothes.
She didn't talk verbally or smile for two days.

And then by Saturday night

She started smiling and playing.

She started eating!

She was doing so well we were sent home Sunday night

just 2 days after surgery!!

She still needed pain meds until Tuesday

Wednesday, we took her in to see the surgeon because her tummy was extended.

She had developed gas bloat syndrome.

Heres a brief explanation of it.

"GAS BLOAT SYNDROME"

"The National Digestive Diseases Information Clearinghouse says that excessive gas, flatulence, abdominal bloating and distention are potential complications of the acid reflux surgical procedure known as fundoplication. These symptoms are called the gas-bloat syndrome and occur in approximately 10 percent of patients who undergo this procedure. The surgery creates a one-way valve that lets food and drink pass through the esophagus but prevents the normal belching of gas leading to its entrapment. Sometimes this condition improves spontaneously with the passage of time."

Read more: http://www.livestrong.com/article/243757-complications-from-acid-reflux-surgery/#ixzz1tAeWqiaF

So Not the worst complication at all!

But a day after Surgery she started having severe diarrhea.

Not surprising considering she always gets it after anesthesia.

But Surgery was 12 days ago and Its only gotten worse.

 For the past 4 days within minutes of food hitting her stomach it all runs out

Now, we thought it was a flu,

(which it probably was because I got it too but it only lasted 36 hours with me)

But because her symptoms stop when she stops getting food,

it looks like its something else.

So far the doctors have been monitoring her closely at home 

and we only had to go to the ER once (Sunday night) to culture her port

because she had a fever.

But if she doesn't start tolerating soon,

They wont have any other option but to admit us.

UGH...

Well, that's just Life with Lily I suppose...

And I am grateful for her and everything that comes with her!

And I am Grateful for the prayers from all of you!

And for the amazing Mercy of The Lord!

 

"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!!