Re:stupid nursing staff interfering with treatment decisions

[Guest guest]

Nikki,

Perhaps you can implore the staff at Dr. H's office in NY to help you in this

situation. Tell them what is going on with the nurse and the ID second opinion,

etc. Maybe Dr. H can fax some info on LD to them and what is expected during

treatment.

It must be difficult to be so far away from your LLMD. I wish you and your

family the best.

Kaethe

[Guest guest]

Kaethe

Dr H in NY has actually been great (as has JF his NP)- he emailed over a

detailed letter explaining what needed to be done when she was paralysed - to

get the picc line in and the Rocephin happening (it took a week to organise on

the Australian end of things - mainly to find a Dr willing to take " orders " from

overseas). He's also been emailing the Aussie Dr letting him know how H's phone

consults are going & what the continuing treatment plan is.

It is just this interfering nurse (who we can't wait to get away from). She has

taken it into her head that H doesn't need IV abx (despite the fact that she was

paralysed), and has been working on trying to get rid of us, or get H's IV abx

stopped for the past month (she's only been working for the service for 5

weeks!). When we stop with this service I will put in a complaint, but I don't

dare do anything between now and then, because she can cause so much damage.

I heard today that it looks like community nursing will take H on (even though

she isn't 18), if we agree to do the treatment ourselves (which is actually what

we've been asking for the past 10 weeks) & if we agree to have an ampule of

adrenaline in the house in case H has an anaphalactic reaction - which I don't

have a problem with either. Hopefully it will be sorted out in the next day or

so.

My main complaint I guess is that we all have to fight for treatment for

ourselves & our family. People with diabetes, cancer, MS, etc don't have to

fight like this (well not in Australia - we don't have the insurance problems

you have, as we are all covered under the govt health insurance - maybe it is

different in the US).

We are trying to bring some ILADS LLMD's out to Australia in 2012 or 2013 so

that we can train up our Australian docs to be LLMD's, but it is a long road to

travel. Having a specialist in country will make a huge difference. We are

really lucky that Dr N McFD travels from San Diego to Australia a couple of

times a year & runs a lyme clinic, & then treats people via phone (she wrote the

Lyme Diet Book). My family are especially lucky that we've all been able to get

treatment from her & Dr H in NY state. It has made a huge difference.

Thanks for all your kind thoughts - I truly appreciate it. I knew you would

understand. I can complain to my friends & extended family, & they are

sympathetic, but they don't " get it " like you all do.

Cheers

Nikki

>

> Nikki,

>

> Perhaps you can implore the staff at Dr. H's office in NY to help you in this

> situation. Tell them what is going on with the nurse and the ID second

opinion,

> etc. Maybe Dr. H can fax some info on LD to them and what is expected during

> treatment.

>

>

> It must be difficult to be so far away from your LLMD. I wish you and your

> family the best.

>

> Kaethe

>

>

>

>

>

>

[Guest guest]

Those are great developments. Good for you for being such a strong advocate for

your family. As soon as you are switched I agree that you should put in a

DETAILED complaint describing and listing every single encounter with her that

was negative and the escalation. Which med school di she go to? Oh, that's

right, NONE. So how is she so free and easy with her opinions? She is not a

specialist and she has no business interfering and a good agency will not take

kindly to her making this much extra work for everyone.

We had Sasha and Maya on PICC lines and it was no big deal to infuse them

myself. I found it less disruptive than having a nurse show up. We never had to

use the adrenaline but it was good to have just in case. Just to say, you will

be fine. We even started mixing the rocephin ourselves because it was half the

price of premixed. The only trick there was to be sure the powder was

completely dissolved, just a matter of taking the time, not especially hard.

Thinking of you.

Best

Natasha

________________________________

From: Nikki <ncoleman@...>

Sent: Tue, January 18, 2011 4:27:27 AM

Subject: [ ] Re:stupid nursing staff interfering with treatment

decisions

Kaethe

Dr H in NY has actually been great (as has JF his NP)- he emailed over a

detailed letter explaining what needed to be done when she was paralysed - to

get the picc line in and the Rocephin happening (it took a week to organise on

the Australian end of things - mainly to find a Dr willing to take " orders " from

overseas). He's also been emailing the Aussie Dr letting him know how H's phone

consults are going & what the continuing treatment plan is.

It is just this interfering nurse (who we can't wait to get away from). She has

taken it into her head that H doesn't need IV abx (despite the fact that she was

paralysed), and has been working on trying to get rid of us, or get H's IV abx

stopped for the past month (she's only been working for the service for 5

weeks!). When we stop with this service I will put in a complaint, but I don't

dare do anything between now and then, because she can cause so much damage.

I heard today that it looks like community nursing will take H on (even though

she isn't 18), if we agree to do the treatment ourselves (which is actually what

we've been asking for the past 10 weeks) & if we agree to have an ampule of

adrenaline in the house in case H has an anaphalactic reaction - which I don't

have a problem with either. Hopefully it will be sorted out in the next day or

so.

My main complaint I guess is that we all have to fight for treatment for

ourselves & our family. People with diabetes, cancer, MS, etc don't have to

fight like this (well not in Australia - we don't have the insurance problems

you have, as we are all covered under the govt health insurance - maybe it is

different in the US).

We are trying to bring some ILADS LLMD's out to Australia in 2012 or 2013 so

that we can train up our Australian docs to be LLMD's, but it is a long road to

travel. Having a specialist in country will make a huge difference. We are

really lucky that Dr N McFD travels from San Diego to Australia a couple of

times a year & runs a lyme clinic, & then treats people via phone (she wrote the

Lyme Diet Book). My family are especially lucky that we've all been able to get

treatment from her & Dr H in NY state. It has made a huge difference.

Thanks for all your kind thoughts - I truly appreciate it. I knew you would

understand. I can complain to my friends & extended family, & they are

sympathetic, but they don't " get it " like you all do.

Cheers

Nikki

>

> Nikki,

>

> Perhaps you can implore the staff at Dr. H's office in NY to help you in this

> situation. Tell them what is going on with the nurse and the ID second

>opinion,

>

> etc. Maybe Dr. H can fax some info on LD to them and what is expected during

> treatment.

>

>

> It must be difficult to be so far away from your LLMD. I wish you and your

> family the best.

>

> Kaethe

>

>

>

>

>

>

[Guest guest]

Nikki,

That crazy nurse has definitely got to go!! She should not be questioning the

treatment orders. I'm a nurse and I cannot fathom what on earth she could be

thinking by doing this. Her warped opinions should be kept to herself and she

should administer care to your daughter in a non-judgmental way. I agree you

should complain after switching to the new agency.

My daughter had a PICC in for 8 months for her IV abx In the beginning she had

coverage from our health insurance for a home nurse to come weekly to change the

dressing. When that ended, she went to the local hospital infusion center. From

day one, she learned to administer the IV antibiotics by herself at home. I

stressed how important sterile technique was and she did it herself beautifully.

You can do the same if need be. Don't be afraid!!

Going to the hospital for the dressing changes and blood work became a golden

opportunity to educate the nurses there on the facts about Lyme and

coinfections. I handed them my trusty information I carry in my purse. They

learned a lot!

Even though we in the US have health insurance problems, you are absolutely

correct. People with diabetes, cancer,MS, don't have to explain to anyone why

they need treatment like Lyme patients do. It's frustrating.

Keep us informed about how you, your husband, and your girls are doing. I know

Dr H is an awesome LLMD. I couldn't get an appointment w him but found our

present LLMD, whom we adore.

Warmly,

Kaethe

Sent from my iPhone

[Guest guest]

Hi

thanks for that - H says it is nice to know that there are other kids who have

been through this. We actually have been through this before when I had IV

Rocephin for 4 months in 2006 for my own LD treatment - we did it all ourselves

at home & had a nurse come in with supplies each week & to change the dressing.

It is just stupid how quickly this has all escalated.

We found out today that the community nursing dept can't take H on until she's

had a consult with an Infectious Diseases Dr (with no experience in diagnosing

or treating LD), & that Dr gives the go ahead for her continuing IV treatment,

so I suspect it is about to come to a crashing halt. Oh well. I'll let you all

know how it goes.

Cheers

Nikki

> >

> > Nikki,

> >

> > Perhaps you can implore the staff at Dr. H's office in NY to help you in

this

> > situation. Tell them what is going on with the nurse and the ID second

> >opinion,

> >

> > etc. Maybe Dr. H can fax some info on LD to them and what is expected

during

> > treatment.

> >

> >

> > It must be difficult to be so far away from your LLMD. I wish you and your

> > family the best.

> >

> > Kaethe

> >

> >

> >

> >

> >

> >