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!