Thursday, April 26, 2012

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
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


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,

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,

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.

"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."

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.
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!

Wednesday, April 4, 2012

"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
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
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
And I hope it NEVER happens again.
So, with that said...
Bring on the Fundo!!