Stay #20 at Hotel PCH

OK here's the latest update on our sweet Little Lily Bug.

The week after she was released from the last hospital stay 

we had a ton of follow up appointments

(9 in 5 days)

At her IVIG appointment her port looked really red and she had a slight fever

and was acting odd so they wouldn't access her port to give the IVIG

until we had been checked out at the ER .

We went to the ER and spent 3 hours waiting for test results 

and to make sure she didn't have an infection in her port

(which is potentially deadly in a person with a REGULAR immune system)

 and for once nothing was wrong.

:D

So we headed back over to her IVIG.

IVIG went well and no other complications arose until Friday Morning.

In my last post I wrote how they finally sent us home with a monitor to tell me if 

she stops breathing in her sleep.

Well its a good thing they did.

Friday morning around 6ish her alarm went off.

I ran in and she was grey and not breathing.

I touched her and she opened her eyes and took a big breath and cried.

It seemed like it wasn't a bad event at all

because she wasn't even blue yet,

just all over grey,

plus she was incredibly easy to pull out of it.

But she hasn't had one of these events while she was sleeping yet..

(at least not as far as I know) 

and it concerned me.

Luckily we had an appointment with her Pulmologist (lung/airway Dr)

that morning so we made the hour long drive to the dr.

She was in a great mood happily talking and singing to me the whole way.

We got to our appointment and went back into the room.

Lily was standing happily coloring when she slammed her crayon down on the 

table and started yelling in a terrified voice

"NO NO NO NO!" 

Her voice got raspy and she went ridged and fell straight as a board backwards into my arms.

She was gasping for breath.

I started to yell for help. 

She turned blue

stopped breathing and passed out.

She had felt it coming...

I don't know how, but she somehow knew it was gonna happen.

The Dr came running in and found her unconscious in my arms.

I put her down on the table

and let the Dr take over.

She woke back up and stared at nothing for about a minute then

burst into tears and cried for 20 minutes.

After actually seeing one of the events her Dr was even more concerned than before.

He sat down and we had to talk about what these events meant for Lily.

He had mentioned a couple of times before that he thought Lily might be a candidate for a Trach.

A basic picture of a Trach

I had always listened to what he said but thought he was 

overreacting and a Trach seems SO EXTREME.

Well, it is extreme,

Very extreme.

But these events are getting more frequent and are getting worse.

He now was/is fully suggesting a Trach for Lily.

And it just FELT WRONG.

My brain was scrambling to think of something we hadn't tried.

Anything at all.

Yes the idea of a trach scared me,

but so did the g tube originally, and the port and the Fundo etc...

But with those they felt right despite of my fear.

This seemed to hasty.

Then I remembered someone, I don't remember who,

(possibly my friend Brandis)

Had mentioned trying a GJ tube with continuous venting.

I mentioned it to her Dr and he paused for a moment and thought

then looked surprised and said

"Well that might just work, Its definitely worth a try."

Now why in the world would a feeding tube make any difference in weather lily can breathe or not?

Well, The results of the last bronchoscopy 

(lung scope)

Did show large amounts of stomach acids all throughout her airway and in her lungs.

And during her last EGD (Stomach scope) they witnessed her refluxing past her Fundo.

Somehow even though her Fundo is perfectly intact and almost too tight, 

She is still refluxing.

That leads us to believe

that it is still the stomach acids that are causing the

laryngospasms

So, If we remove anything and everything from the stomach,

That should stop these events.

So Today Lily is being admitted to the hospital for a GJ tube.

In a GJ feeding tube, her formula will be fed into her intestines

bypassing her stomach completely.

Since all her feeds will be going into her intestines we will then be draining her stomach

of all gastric acids 24/7.

If there is nothing in her stomach she cant reflux right?

 This is our last ditch effort to prevent a Trach.

A Trach means lung infections for an already immune compromised little girl.

It means no swimming, EVER.

It means possible permanent damage to her windpipe, and vocal chords.

If she does have another "event" after getting the GJ tube

we will have to trach her.

This GJ tube MUST to work.

It simply MUST work.

If it doesn't... well We will tackle that hurdle if it presents itself.

As for now, we are just getting a GJ tube.

I CAN do hard things with the help of The Lord.

I know The Lord is mindful of Lily. 

I know things will go according to his will.

He is in control and I take comfort in that.

This life was not meant to be a walk in the park.

It is the refiners fire.

We are being shaped into better people through every trial.

And our suffering will be but a moment

• Alma 33:11

  "11 And thou didst hear me because of mine afflictions and my sincerity; and it is because of thy Son that thou hast been thus merciful unto me, therefore I will cry unto thee in all mine afflictions, for in thee is my joy; for thou hast turned thy judgments away from me, because of thy Son."