Re: update on Dani/donelle

[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 >(

>

>