Wednesday, August 29, 2012

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!


10 comments:

  1. I feel physically sick reading this. Just horrifying. Will definitely continue to fast and pray for this sweet girl. I'm so sorry.

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  2. I'm absolutely horrified to hear this - I would never have imagined this could happen. Many thoughts, prayers, and strength sent to you and little Lily.

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  3. I have been following your blog for a while now. I am touched by your sweet Lily. This is un-excusable and heartbreaking. That baby girl should never have been put through that torture. Sometimes I think doctors and nurses are too desensitized. I can only imagine your pain, frustration and outrage going through that. I sure hope this never happens again and that they are punished in some way for their actions. I send love and best wishes to Lily, you and the rest of the family.

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  4. Absolutely heartbreaking! I cant stop the tears and the pain in my heart for you and your sweet Lily. I cant imagine the agony you must have felt for your precious child. I'm so sorry Alex. What was wrong with those supposed professionals doctors?? I just ache inside for you.

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  5. I am so very sorry! This is outrageous! My son is 7 with mito and our hospital always, at least, has anesthesia give him gas or verset when having his gj tube switched. And the pain meds should have been given before they started! It sounds like this hospital needs new drs. Or more education! I pray Lily will start to feel better today and will do better with the gj.

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  6. Our daughter has a g currently but I've been thru enough bad w her to tell u this...stick to your guns. do not give in file complaints..make appointment with chief of staff of hospital and be ready to write letters to your congressman and your local paper. our kids go thru enough!!!! BTW our daughter is 3 .25 hospitalizations so far..10 surgeries...there's gotta be a better way. caringbridge.org/visit/moriaholiviadement.
    Moriahs Mommy

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  7. Tears are flowing as I read your post. I am so sorry your sweet little girl had to go through this. I am thankful that she has such a strong advocate as her momma.

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  8. This makes me so ANGRY!!!!! I have a severely disabled daughter who is non verbal and I would be LIVID if something like this ever happened to her!!!!!!

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  9. My heart hurts for you and dear Lily.

    My daughter is on the 6th floor now. Hopefully, we are discharged today. I am so glad that Sara Eaton posted your blog on fb.

    We are going to Boston Children's next week because I can no longer manage my complex child in this crazy, unfeeling, bureaucratic system.

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    1. Peggy I just checked out you blog and realized not only do we both have medically complex children but we share the same faith. We are LDS as well :) Feel free to message me on FB if you ever want to chat. :)

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