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Hi Guys,

Thanks for emailing support to us for Jillie to get through her

various surgeries. She is now 10 days post a tonsillectomy, ear

tubes, a liver biopsy and an endoscopy.

As per the luck of an ICU nurse with a child in the hospital, things

did not go as planned. I was allowed to be with her until she was

unconscious which was awesome and a first in this the 5th time under

anesthesia. She was in the OR for 5 hrs! Apparently she could not be

intubated by anesthesia and the attending in ORL had to do it. She

has a very small unusual airway and is known to be problemmatic but

this inability to easily intubate whilst unconscious is scary. In an

emergency - unless in a phenomenal hospital, she might not make it.

The docs were nervous about pulling out the breathing tube but did

after giving her a hefty dose of steroids. She was sent to the PICU

with one IV line in and 13 failed attempts which were thankfully done

under anesthesia! Unfortunately, they had to do several blood draws

in the remaining time of our stay. That was another 8 sticks. 21

sticks in all in 24 hrs. I know how crazy it makes you all having

your child stuck for IV's. Imagine what is like for me - an expert in

IV's and blood draws to deal with this. I was fit to be tied.

Eventually we go home. Jillie eventually falls asleep and starts with

the noisy obstructive breathing. Then she starts having apneas (long

pauses in breathing) that require constant repositionning and a lot

of oxygen to keep her oxygen level up. This went on for 3 nights

before the swelling in her airway started to go down.

However, she is refusing to eat of drink, is constantly covering up

her arms and legs (probably in case she gets stuck again) and is

hitting me (this is new). And she is no longer the calm for her

growth hormone shots. Tonight, she was still crying 15 minutes after

her shot. Anyone any ideas on how to deal with all this. I was so

happy to get out of the house tonight and come to work! I think she

blames me for everything and I don't know if she'll ever forgive me.

I feel so bad for her and guilty for putting her through this.

Anyhow, hope you all are well and staying warm. In New England we

remain sick of the snow!

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hey victoria!!

i am so sorry jillie and you had such a rough time during and after

her surgery!! i have know words of wisdom as to how to get her back

to where she was before the surgery, but i just wanted to let you

know you guys are in my thoughts and prayers!! know that you made

the best decision possible for her and one day when she is older she

will understand what you guys had to go through to make sure she got

the best care possible!!! ((HUGS)) good luck!!

jodie c

>

> Hi Guys,

>

> Thanks for emailing support to us for Jillie to get through her

> various surgeries. She is now 10 days post a tonsillectomy, ear

> tubes, a liver biopsy and an endoscopy.

>

> As per the luck of an ICU nurse with a child in the hospital,

things

> did not go as planned. I was allowed to be with her until she was

> unconscious which was awesome and a first in this the 5th time

under

> anesthesia. She was in the OR for 5 hrs! Apparently she could not

be

> intubated by anesthesia and the attending in ORL had to do it. She

> has a very small unusual airway and is known to be problemmatic

but

> this inability to easily intubate whilst unconscious is scary. In

an

> emergency - unless in a phenomenal hospital, she might not make

it.

> The docs were nervous about pulling out the breathing tube but did

> after giving her a hefty dose of steroids. She was sent to the

PICU

> with one IV line in and 13 failed attempts which were thankfully

done

> under anesthesia! Unfortunately, they had to do several blood

draws

> in the remaining time of our stay. That was another 8 sticks. 21

> sticks in all in 24 hrs. I know how crazy it makes you all having

> your child stuck for IV's. Imagine what is like for me - an expert

in

> IV's and blood draws to deal with this. I was fit to be tied.

>

> Eventually we go home. Jillie eventually falls asleep and starts

with

> the noisy obstructive breathing. Then she starts having apneas

(long

> pauses in breathing) that require constant repositionning and a

lot

> of oxygen to keep her oxygen level up. This went on for 3 nights

> before the swelling in her airway started to go down.

>

> However, she is refusing to eat of drink, is constantly covering

up

> her arms and legs (probably in case she gets stuck again) and is

> hitting me (this is new). And she is no longer the calm for her

> growth hormone shots. Tonight, she was still crying 15 minutes

after

> her shot. Anyone any ideas on how to deal with all this. I was so

> happy to get out of the house tonight and come to work! I think

she

> blames me for everything and I don't know if she'll ever forgive

me.

> I feel so bad for her and guilty for putting her through this.

>

> Anyhow, hope you all are well and staying warm. In New England we

> remain sick of the snow!

>

>

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Guest guest

,

You poor thing. I'm glad to hear that you are home now. Hopefully in a while she

will be feeling much better. I'm sure she will not blame you, you care and love

her more than anything. She might not show it by hitting but that will pass.

Take care

Marcy na's mom

nightnuse4babies wrote:

Hi Guys,

Thanks for emailing support to us for Jillie to get through her

various surgeries. She is now 10 days post a tonsillectomy, ear

tubes, a liver biopsy and an endoscopy.

As per the luck of an ICU nurse with a child in the hospital, things

did not go as planned. I was allowed to be with her until she was

unconscious which was awesome and a first in this the 5th time under

anesthesia. She was in the OR for 5 hrs! Apparently she could not be

intubated by anesthesia and the attending in ORL had to do it. She

has a very small unusual airway and is known to be problemmatic but

this inability to easily intubate whilst unconscious is scary. In an

emergency - unless in a phenomenal hospital, she might not make it.

The docs were nervous about pulling out the breathing tube but did

after giving her a hefty dose of steroids. She was sent to the PICU

with one IV line in and 13 failed attempts which were thankfully done

under anesthesia! Unfortunately, they had to do several blood draws

in the remaining time of our stay. That was another 8 sticks. 21

sticks in all in 24 hrs. I know how crazy it makes you all having

your child stuck for IV's. Imagine what is like for me - an expert in

IV's and blood draws to deal with this. I was fit to be tied.

Eventually we go home. Jillie eventually falls asleep and starts with

the noisy obstructive breathing. Then she starts having apneas (long

pauses in breathing) that require constant repositionning and a lot

of oxygen to keep her oxygen level up. This went on for 3 nights

before the swelling in her airway started to go down.

However, she is refusing to eat of drink, is constantly covering up

her arms and legs (probably in case she gets stuck again) and is

hitting me (this is new). And she is no longer the calm for her

growth hormone shots. Tonight, she was still crying 15 minutes after

her shot. Anyone any ideas on how to deal with all this. I was so

happy to get out of the house tonight and come to work! I think she

blames me for everything and I don't know if she'll ever forgive me.

I feel so bad for her and guilty for putting her through this.

Anyhow, hope you all are well and staying warm. In New England we

remain sick of the snow!

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