Re: update on Dani/donelle

[Guest guest]

((Donelle)) First off before I forget how is Glenn doing ? what did the onc say

on monday??

The reason Dani had to go through the surgery

She had arm numbness/pain we thought it was a pinched nerve, they did an MRI

this passed March and oh no it couldnt be something simple ,

She was diagnosed with Chiari 1 malformation with a syrinx , the Chiari

basically means her brain is to big for skull and part of the cerebellum called

tonsils slipped down into the spinal canal, blocking the spinal fluid flow,

which caused a syrinx ( fluid filled cyst type thingy)

Her syrinx goes from C2 (neck area) all the way to the very bottom of spinal

canal, which puts pressure on nerves and causes neuropathy issues,

Right now she suffers from right sided

facial/neck/shoulder/midback/neck/arm/hand numbness, she has intermittent pain

in arm /neck /lower back (not sure if the lower back is caused by a cyst they

accidently found on her ovary when doing MRI for spine)

If the syrinx isnt corrected then she could eventually face paralysis and lose

of bowel /bladder function.

Since the Chiari caused her syrinx , they wanted to fix the Chiari malformation

first , in hopes that by doing so it will make the spinal fluid flow correctly

and would make the syrinx disappear,

She will have more MRI's done at 3 and 6months to make sure this happens , if it

doesnt then she will have to go back in and have spine surgery where they will

put a shunt in spine and drain it into her stomach.

UGH UGH UGH

Tonight was very rough on her she has a immense spinal headache ( all the spinal

fluid being able to flow correctly is making her brain hurt) and her neck hurts

On the scale of 1-10 her headache was at a 8.5 and her neck was at a 9

Which is totally unacceptable she was in so much pain she was crying ( she isnt

the crying type)

We had been telling the day nurse that her pain wasnt under control ,

she has been on Fentanil( sp) IV that she can self dose with every 10min and

Tylenol 3 codeine.

The had started cutting back on the IV meds this afternoon , in the meantime her

pain was escalating , and the STUPID nurse was trying to say well there isnt

anything else we can do.

This evening we left for a few min to get her a video from the video store to

watch when she feels better tomorrow ( give her something to look forward to )

When we got back her pain had escalated to the 8.5 , 9

I was furious , the night nurse had JUST came on so I grabbed her and told her

what had been going on with Dani and the pain,

She promplty got hold of the resident Doc , who came to the room personally and

upped her Fentanil back to where it was !!!!

He said that apparently her body wasnt ready to be weaned from it yet , well

HELLO why the heck couldnt have the day nurse do this??????????( contact the doc

i mean)

Oh wait that would be asking to much from her right???

Just like when Dani vomitted ( she is nauseas/vomitting and on Zofran and

Finigrin(sp)

The nurse was in the room when this happened and then left when Dani got done,

as she closes the door , Dani with her eyes closed said " Did she leave? " I said

yes

Dani said THE LEAST SHE COULD HAVE DONE WAS GIVE ME A WET CLOTH TO WIPE THE

VOMIT OF MY FACE WITH ,

stupid nurse !!

Dani had also gotten vomit on her nightie, and the nurse NEVER CHANGED IT , me

and hubby changed it ourselves, she offered Dani a icepack , which of course she

" forgot " to bring her

Need I go on??

UGH UGH

I pray we dont get her tomorrow , for if we do there is no telling what I will

say >(

Thanks for the prayers and sorry to be soooooooooooooooo long winded but I just

had to vent

Deb

Grandmommyandme@... wrote:

Deb and Joe... Prayers for both of you and little Dani....God, why does she

have to go through this??

What actually caused this Debbie? I'm sure you told us a while ago, but my

senile brain is not functioning....LOL Take care of you and Joe, Debbie.

You rest when Dani is resting...all bodies need sleep to heal.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Sounds like that day nurse needs to find another line of work.... She

evidently isn't cut out to be a nurse if she can't care for a patient

properly, a young girl no less. I sure hope Dani is more comfortable

now that resident upped her pain meds.. again.

I know this is agonizing for you to know she is suffering. HUGS Jolene

deb vamdembos wrote:

> ((Donelle)) First off before I forget how is Glenn doing ? what did

> the onc say on monday??

>

> The reason Dani had to go through the surgery

> She had arm numbness/pain we thought it was a pinched nerve, they did

> an MRI this passed March and oh no it couldnt be something simple ,

> She was diagnosed with Chiari 1 malformation with a syrinx , the

> Chiari basically means her brain is to big for skull and part of the

> cerebellum called tonsils slipped down into the spinal canal, blocking

> the spinal fluid flow, which caused a syrinx ( fluid filled cyst type

> thingy)

> Her syrinx goes from C2 (neck area) all the way to the very bottom of

> spinal canal, which puts pressure on nerves and causes neuropathy issues,

> Right now she suffers from right sided

> facial/neck/shoulder/midback/neck/arm/hand numbness, she has

> intermittent pain in arm /neck /lower back (not sure if the lower back

> is caused by a cyst they accidently found on her ovary when doing MRI

> for spine)

> If the syrinx isnt corrected then she could eventually face paralysis

> and lose of bowel /bladder function.

> Since the Chiari caused her syrinx , they wanted to fix the Chiari

> malformation first , in hopes that by doing so it will make the spinal

> fluid flow correctly and would make the syrinx disappear,

> She will have more MRI's done at 3 and 6months to make sure this

> happens , if it doesnt then she will have to go back in and have spine

> surgery where they will put a shunt in spine and drain it into her

> stomach.

> UGH UGH UGH

> Tonight was very rough on her she has a immense spinal headache ( all

> the spinal fluid being able to flow correctly is making her brain

> hurt) and her neck hurts

> On the scale of 1-10 her headache was at a 8.5 and her neck was at a 9

> Which is totally unacceptable she was in so much pain she was crying (

> she isnt the crying type)

> We had been telling the day nurse that her pain wasnt under control ,

> she has been on Fentanil( sp) IV that she can self dose with every

> 10min and Tylenol 3 codeine.

> The had started cutting back on the IV meds this afternoon , in the

> meantime her pain was escalating , and the STUPID nurse was trying to

> say well there isnt anything else we can do.

> This evening we left for a few min to get her a video from the video

> store to watch when she feels better tomorrow ( give her something to

> look forward to )

> When we got back her pain had escalated to the 8.5 , 9

> I was furious , the night nurse had JUST came on so I grabbed her and

> told her what had been going on with Dani and the pain,

> She promplty got hold of the resident Doc , who came to the room

> personally and upped her Fentanil back to where it was !!!!

> He said that apparently her body wasnt ready to be weaned from it yet

> , well HELLO why the heck couldnt have the day nurse do

> this??????????( contact the doc i mean)

> Oh wait that would be asking to much from her right???

> Just like when Dani vomitted ( she is nauseas/vomitting and on Zofran

> and Finigrin(sp)

> The nurse was in the room when this happened and then left when Dani

> got done, as she closes the door , Dani with her eyes closed said " Did

> she leave? " I said yes

> Dani said THE LEAST SHE COULD HAVE DONE WAS GIVE ME A WET CLOTH TO

> WIPE THE VOMIT OF MY FACE WITH ,

> stupid nurse !!

> Dani had also gotten vomit on her nightie, and the nurse NEVER CHANGED

> IT , me and hubby changed it ourselves, she offered Dani a icepack ,

> which of course she " forgot " to bring her

> Need I go on??

> UGH UGH

> I pray we dont get her tomorrow , for if we do there is no telling

> what I will say >(

>

>

[Guest guest]

Deb, ugh, I hate your daughter's nurse, I've had a few like that and I would

hate for my child to be subjected to one, how maddening. I hate she has so much

pain. Hopefully all will progress well from here on out. Your family has been

through so much! ~~Dianna

deb vamdembos debbied31@...> wrote:((Donelle)) First off before I forget

how is Glenn doing ? what did the onc say on monday??

The reason Dani had to go through the surgery

She had arm numbness/pain we thought it was a pinched nerve, they did an MRI

this passed March and oh no it couldnt be something simple ,

She was diagnosed with Chiari 1 malformation with a syrinx , the Chiari

basically means her brain is to big for skull and part of the cerebellum called

tonsils slipped down into the spinal canal, blocking the spinal fluid flow,

which caused a syrinx ( fluid filled cyst type thingy)

Her syrinx goes from C2 (neck area) all the way to the very bottom of spinal

canal, which puts pressure on nerves and causes neuropathy issues,

Right now she suffers from right sided

facial/neck/shoulder/midback/neck/arm/hand numbness, she has intermittent pain

in arm /neck /lower back (not sure if the lower back is caused by a cyst they

accidently found on her ovary when doing MRI for spine)

If the syrinx isnt corrected then she could eventually face paralysis and lose

of bowel /bladder function.

Since the Chiari caused her syrinx , they wanted to fix the Chiari malformation

first , in hopes that by doing so it will make the spinal fluid flow correctly

and would make the syrinx disappear,

She will have more MRI's done at 3 and 6months to make sure this happens , if it

doesnt then she will have to go back in and have spine surgery where they will

put a shunt in spine and drain it into her stomach.

UGH UGH UGH

Tonight was very rough on her she has a immense spinal headache ( all the spinal

fluid being able to flow correctly is making her brain hurt) and her neck hurts

On the scale of 1-10 her headache was at a 8.5 and her neck was at a 9

Which is totally unacceptable she was in so much pain she was crying ( she isnt

the crying type)

We had been telling the day nurse that her pain wasnt under control ,

she has been on Fentanil( sp) IV that she can self dose with every 10min and

Tylenol 3 codeine.

The had started cutting back on the IV meds this afternoon , in the meantime her

pain was escalating , and the STUPID nurse was trying to say well there isnt

anything else we can do.

This evening we left for a few min to get her a video from the video store to

watch when she feels better tomorrow ( give her something to look forward to )

When we got back her pain had escalated to the 8.5 , 9

I was furious , the night nurse had JUST came on so I grabbed her and told her

what had been going on with Dani and the pain,

She promplty got hold of the resident Doc , who came to the room personally and

upped her Fentanil back to where it was !!!!

He said that apparently her body wasnt ready to be weaned from it yet , well

HELLO why the heck couldnt have the day nurse do this??????????( contact the doc

i mean)

Oh wait that would be asking to much from her right???

Just like when Dani vomitted ( she is nauseas/vomitting and on Zofran and

Finigrin(sp)

The nurse was in the room when this happened and then left when Dani got done,

as she closes the door , Dani with her eyes closed said " Did she leave? " I said

yes

Dani said THE LEAST SHE COULD HAVE DONE WAS GIVE ME A WET CLOTH TO WIPE THE

VOMIT OF MY FACE WITH ,

stupid nurse !!

Dani had also gotten vomit on her nightie, and the nurse NEVER CHANGED IT , me

and hubby changed it ourselves, she offered Dani a icepack , which of course she

" forgot " to bring her

Need I go on??

UGH UGH

I pray we dont get her tomorrow , for if we do there is no telling what I will

say >(

Thanks for the prayers and sorry to be soooooooooooooooo long winded but I just

had to vent

Deb

Grandmommyandme@... wrote:

Deb and Joe... Prayers for both of you and little Dani....God, why does she

have to go through this??

What actually caused this Debbie? I'm sure you told us a while ago, but my

senile brain is not functioning....LOL Take care of you and Joe, Debbie.

You rest when Dani is resting...all bodies need sleep to heal.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Oh, Debbie...it's just heartbreaking they aren't taking good care of our

Dani!!! You need to speak up, too. Don't be afraid to!!! I have found

dealing

with all Glenn's drs., nurses, etc. (in and out of hosp. surroundings) and

when Mom was in the hospital that indeed the " squeaky wheel gets the job

done " .... Sometimes the nurses are overworked, but sometimes THEY JUST DON'T DO

THEIR DAMN JOB!!! And, you can tell, it irks the hell out of me!!! They are

suppose to be special people doing a special job....and I think now, since

salaries are so high, lots of people that really shouldn't be nursing, are

doing

it just for the money and ability to choose their own hours. Get on em,

Deb....let them know you are there!!! Insist that they take care of Dani,

properly!!! For your sake, too. You don't need the added stress!!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Donnelle is right. Fight, fight, fight.

My mom fought her hardest for me when I had a ruptured spleen and a premature

baby. She had a nurse fired.

I didn't read the other note on Dani but I will keep praying for her and you

keep fighting for her.

Karima

Re: update on Dani/donelle

Oh, Debbie...it's just heartbreaking they aren't taking good care of our

Dani!!! You need to speak up, too. Don't be afraid to!!! I have found

dealing

with all Glenn's drs., nurses, etc. (in and out of hosp. surroundings) and

when Mom was in the hospital that indeed the " squeaky wheel gets the job

done " .... Sometimes the nurses are overworked, but sometimes THEY JUST DON'T

DO

THEIR DAMN JOB!!! And, you can tell, it irks the hell out of me!!! They are

suppose to be special people doing a special job....and I think now, since

salaries are so high, lots of people that really shouldn't be nursing, are

doing

it just for the money and ability to choose their own hours. Get on em,

Deb....let them know you are there!!! Insist that they take care of Dani,

properly!!! For your sake, too. You don't need the added stress!!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Boy Deb, I sure can feel what you are going through with uncariung

nurses. Had several of them myself in the hospital. Makes me wonder

why they even choose to be a nurse. Is it that they enjoy watching

people suffer? I wonder!!!! I do hope it goes better for your

daughter. You have all gone through so much already. Something good

has got to happen!!!! Am keeping your daughter in my prayers!!! Ingrid

> Deb and Joe... Prayers for both of you and little Dani....God, why

does she

> have to go through this??

>

> What actually caused this Debbie? I'm sure you told us a while

ago, but my

> senile brain is not functioning....LOL Take care of you and Joe,

Debbie.

> You rest when Dani is resting...all bodies need sleep to heal.

>

> Lots of hugs and prayers, Donelle

> Caregiver to Glenn

>

>

>