They REALLY messed up this time...

Well Lilys tube change was a bit of a disaster.

I would be lying if I said I wasn't upset about it.

It should have been a simple quick 10 minute procedure.

Unfortunately, things went wrong...

That seems to happen a lot when Lily's health is involved...

What should have been a simple quick procedure turned into

45 minutes of torture for Lily,

leaving her writhing in pain and seriously traumatized.

When they tried to place her GJ

a couple of things happened.

First when they removed her G tube she bled A LOT,

which isn't unheard of, but isn't typical either.

Then when they tried to put the GJ tube in they realized that Lily's anatomy

was different in her bowels and instead of curving it takes a sharp right angle turn.

So that made placing it very difficult.

All of that couldn't be prevented and no one is to blame for any of that.

The part that went horribly wrong was

Lily was awake.

Like wide awake.

Now for a typical button change or a 

TYPICAL GJ change being awake is fine. 

there should only be minimal discomfort if any at all.

But this wasn't a typical button change, and 

Lily IS NOT a typical patient.

And where things went horribly wrong was instead of stopping

and realising because of her anatomy this was gonna be difficult 

and pulling out and putting her to sleep, 

They proceeded.

 They held her down for 45 minutes poking and prodding at her

until it finally slipped into place.

When they brought her to me her whole stomach was stained in blood she was dripping with sweat

And Shaking uncontrollably and

SCREAMING in pain.

And I mean SCREAMING.

I asked why she was hurting and

 they said she wasn't.

They said she was just traumatized.

JUST traumatized?!?!?

I asked why she was all bloody and they said 

"I don't know she just started bleeding when we took the tube out and tried to put the new one in"

I told them to give her some Tylenol for pain and they said 

no.

Then EVERYONE disappeared.

They left us in the recovery room

BY OURSELVES

for 30 minutes while Lily SCREAMED in pain.

We looked everywhere for someone to help us.

They were not to be found.

Until someone came to get us and take us back up to our room.

As soon as we got there I explained to the nurse what happened.

She looked up Lily's records about the procedure.

And THERE WERE NONE!

(By this time folks I was LIVID, like shaking, tears in my eyes, could hardly speak, angry

but I kept my calm exterior for Lily's sake. She had enough to worry about and didn't need an angry Mommy biting peoples heads off...

OOOHHH but I wanted to...)

I told our sweet nurse that Lily needed pain meds like pronto and she agreed.

The problem was it was the Dr who preformed the tube switch that had to order meds.

Well and hour and a half later that Dr came up to talk to me

(only because our AWESOME nurse DEMANDED it)

I calmly but firmly told her I was unhappy and extremely disappointed and confused with how things were handled

and that Lily needed pain meds NOW!!!

All I was asking for was Tylenol

Lily was still shaking uncontrollably and SCREAMING and CRYING

"OW OW OW"

The Dr saw this.

She had to ask me to repeat what I said because Lily was so loud.

And she still tried to  say she wasn't in pain.

I told her it didn't matter if SHE thought Lily was in pain or not

I told her this was our 20th hospital stay.

I have seen how my daughter reacts to trauma,

I have seen how she reacts to pain,

AND I have seen how she acts when it is BOTH trauma and pain.

And that in this case it was both.

I told her 

I AM THE PARENT AND I SAY SHE GETS MEDS,

IF I SAY SHE IS HURTING THEN SHE IS.

(It sure helps to know hospital policy and know that she was breaking policy by refusing pain meds)

She just said OK and left.

An hour and a half later

Lily was FINALLY approved for TYLENOL!

By this time the nurse was fighting back tears, and so was the head nurse.

I don't think I had any left.

I was kicking myself for taking the baby Tylenol out of my purse just 2 days ago.

If I had had any I would have given it to her in a moment.

The Tylenol ,when it finally came, calmed her and she stopped screaming enough to sleep.

But every 4 hours, like clockwork, her heart rate rises, she begins breathing fast and

wakes up crying "ow ow ow"

Today I finally convinced them to give her something a bit stronger, and that helped.

Her smile came back and she started playing softly and gingerly with her Elmo.

But still over 24 hours later she is still hurting SO bad.

Two nurses and I filed formal complaints.

Her normal Drs were either to mad to speak, or literally in tears when I told them what happened.

It turns out that during the 45 minutes that they were

messing around in her, her stoma closed

(stoma is the hole surgically place for the feeding tube to go in) 

Then they just forced it back open

and she felt it all

Her GI Dr said she basically had G tube surgery while she was awake to feel it all.
He WAS FURIOUS.

 They also caused damage to her intestines.

She is barely tolerating feeds at a rate of 15 ml an hour.

She has to be at least at 45ml and hour before she can go home.

If she is still hurting in the morning they will have to take more pictures and may have to remove the tube and do it again (Under anesthesia and WITH pain meds)
  or she might not even be able to have one at all...

so that's that I guess,

We just have to wait and hope the damage isn't severe and will correct itself quickly.

I don't really know what else to say

except thank you all for your thoughts and prayers!