Temperature instability/low body temps/hypothermia/dysautonomia/autonomic dysregulation

Diagnosis
Ellie has Dysautonomia also called Autonomic Dysregulation.  This means that her Autonomic bodily functions (breathing, heartrate, blood pressure, TEMPERATURE) etc get out of whack.  Her body has a hard time regulating them like they should.  This is due to her brain be malformed/under-developed/etc...

History
When she was little and we used to go camping she used to always drop her heart-rate during the night.  I could never figure out why she would only do this while we were camping.

Later on I figured out it was because she was cold.  Her temperature and heart-rate are best friends.  If one is low, the other is usually low and vice-versa.  

So back to the camping example...she was getting cold and her heart-rate was dropping...but I didn't know it at the time, so I was never checking her temperature.

Current Day
All day, every day her temperature is something we need to have in the back of our mind.

Her normal body temperature is 93F-95.5F.  We found this by logging her temp every several hours for several days while she was fairly healthy and found out what is NORMAL for her.

She does OK maintaining her temperature in a temperate environment (indoors) as long as she is healthy.  I tease that she is like a snake and has to get her heat from outside sources.  It would not matter how many blankets you pile on top of her she would not warm up, it has to be done by mechanical means (bath, electric blanket etc)


Her normal heartrate awake will be 70's to mid 90's.  When her temp drops then her heart-rate will drop to the 40's or 50's.  I have even seen it in the 30's.  If her temp is below 70 it means take her temp.

The lowest I have seen her temp is 86F. (yes...the Dr.'s were freaking out...ha ha!  Funny looking back...not funny then). 

We carry and thermometer and electric blanket everywhere.

A lot of time instead of getting a fever she will get a low body temperature (which can actually be more dhan a fever).  
She can get a fever, but it more common for her to get a low temp when she is sick.  I have seen her temp as high as 106F.  This was when we accidentally left the electric blanket on her on high all night long.  whoops.  We forgot to turn it off.


Hypot

Hypothermia Thermometers
Most thermometers will only measure down to abou.  Most thermometers will only measure down to 91 or 92 F  and won't work to measure lower than that.    Even the ones in the hospital will not measure that cold.   purchased a hypothermia thermometer from Amazon and carry it with her at ALL TIMES.  I originally purchased an ear and a rectal/armpit thermometer that were both hypothermia thermometers.  But I found that the ear one didn't work well on her due to ear wax and lots of ear infections.  

Typically when she drops it will be into the 91 F range.  M

.



This is the hypothermia thermometer I originally purchased.  https://www.amazon.com/Veridian-08-308-10-second-Hypothermia-Thermometer/dp/B003SLPTIG/ref=sr_1_3_a_it?ie=UTF8&qid=1529445493&sr=8-3&keywords=hypothermia+thermometer

This is the hypothermia thermometers they use at my local children's hospital.
https://www.amazon.com/ADC-Adtemp-Hypothermia-Thermometer-Adtemp-419/dp/B000RN15B8/ref=sr_1_1_a_it?ie=UTF8&qid=1529445493&sr=8-1&keywords=hypothermia+thermometer

They both work great.  

So I currently only do armpit temps.  Like I said...I didn't feel like ear temps work well for her.  When we really want an accurate temp we will do rectal.  But this is usually only when she is inpatient and her temp is really low.

Action Plan
When we see a low temp or low heart-rate these are the steps we take...
If she is scheduled to get a shower, we will give her a warm bath instead of a shower.  We will take her temp about every 15 minutes until it gets into her low normal range.  (We want to stop at her low normal because if we waited until her high normal the temp will keep going up for a while.  So if we wait until we get to her high normal, then we are going to overshoot and make her too hot.)  A warm bath is the fastest way to bring her temp up.  We can bring it up from 90's to 93 or 94 within an hour.

If it is not shower day then we do the electric blanket with several layers of thick normal blanket on top of the electric blanket to trap the heat.  She warms up faster with her clothes off.  If she keeps the clothes on it insulates her against the heat from the electric blanket.  If she is in public/school we do not take her clothes off.  The electric blanket can warm her up about 1 degree per hour.

Showers
We always take temp before giving a shower so we know if we need to give a bath instead.  She will cool off about 1 degree by taking a shower.  We always blow dry her hair right after getting out of the shower I don't want her temp to drop even lower.

Clothes
She pretty much wears pants, socks and long sleeve shirts year round.  There are only a few months in summer when she can get by with shorts and short sleeves.  We always have additional layers and additional blankets and hats with us at all times.

Timer
We ALWAYS use a timer with the electric blanket to turn it off automatically (after we had the experience of 106F temp that one time we have always used a timer).  Here is an example of a timer.  Do not get one that you have to set the time of day...just get a simple one that you choose how long you want something on for and then it will shut off.   https://www.amazon.com/Century-Digital-Countdown-Repeat-Function/dp/B01D3QEK4E/ref=sr_1_38?ie=UTF8&qid=1529446696&sr=8-38&keywords=appliance+timer+1+hour

Ellie tolerates the electric blanket on high for 1 hour straight and then I give her 20 minutes off.  Then an hour on and repeat until up to temperature.

Charts
I have a chart of what works for Ellie it looks something like this... (different charts for different settings)
Inpatient
92.9F or lower she needs the bair hugger.  Have bair hugger on her with 1 bath sheet over top of the bair hugger.  Leave on high for 20 minutes.  Recheck temp.  Leave Bair hugger on her, but turn off for 20 minutes.  Repeat until temp reaches 94.4 F
93F-95.5  Normal Range
95.6-96.5 Remove socks.  Change into shorts.  Remove blankets.  Wipe legs/arms/face with a wet cloth.  Give Ibuprofen or Acetaminophfen.
96.6-99.9 Low Grade fever.  Give Ibuprofen or Acetaminofen.  Call Mom.  Give ice bath.  Lay her on chux on her bed.  Fill basin with water and add ice.  Put washcloths in the water.  Lay 1 washcloth in each of the following places...1 per leg, 1 on belly, one on clest, 1 on neck.  On on forehead.  1 in each armpit.  Have extra washcloths and just keep constantly rotating them.  Stop when you get to 95F

School
90.4 or lower call 911 and go to emergency room.  Call Mom.
90.5-92.9F or lower.  Call Mom.  Lay her down (she warms up better laying down than sitting up).Put electric blanket on with another blanket over top.  Turn electric blanket on for 1 hour.  Then turn off for 20 minutes and repeat until temp is within normal range.
93F-95.5  Normal Range
95.6-96.5 Remove socks.  Change into shorts.  Remove blankets.  Use a fan if available.  Wipe legs/arms/face with a wet cloth.  Give Ibuprofen or Acetaminophfen.
96.6-99.9 Low Grade fever.  Give Ibuprofen or Acetaminofen.  Call Mom to pick her up.  Mom will give her ice bath at home.

Home
90.4 or lower call 911 and go to emergency room.  Call Mom.
90.5-92.9F or lower.  Call Mom.  Give warm bath if possible.  Take temp every 15 minutes until in low normal range.
If bath is not possible...Lay her down (she warms up better laying down than sitting up).Put electric blanket on with another blanket over top.  Turn electric blanket on for 1 hour.  Then turn off for 20 minutes and repeat until temp is within low normal range.
93F-95.5  Normal Range
95.6-96.5 Remove socks.  Change into shorts.  Remove blankets.  Use a fan or room AC if available.  Wipe legs/arms/face with a wet cloth.  Give Ibuprofen or Acetaminophfen.
96.6-99.9 Low Grade fever.  Give Ibuprofen or Acetaminofen.  Call Mom.  Give ice bath.  Lay her on chux on her bed.  Fill basin with water and add ice.  Put washcloths in the water.  Lay 1 washcloth in each of the following places...1 per leg, 1 on belly, one on clest, 1 on neck.  On on forehead.  1 in each armpit.  Have extra washcloths and just keep constantly rotating them.  Stop when you get to 95F

Brand of Electric Blanket
The type of electric blanket I like is called Biddeford.  You can buy them at Target in the winter months for about $40 for a twin size.  They are more expensive on Amazon.  The reason these are better than Sunbeam or any other brand is the warranty.  Sunbeam is a limited 1 year warranty and you have to save your receipt.  With Biddeford it is a LIFETIME warranty.  And you do not need to register the product or keep your receipt.  You just call them and say it is not working.  They give you a return # to include when you ship it back.  It costs about $9 to ship it back to them.  But they will send you a replacement for free (other than that $9 shipping to send it to them).  They will keep doing this over and over and over.  https://www.amazon.com/Biddeford-2020-905291-700-Electric-MicroPlush-Blanket/dp/B00DN6SRJO/ref=sr_1_9?ie=UTF8&qid=1529447115&sr=8-9&keywords=biddeford+electric+blanket

Conversion Chart
I created my own temperature conversion chart from celcius into farenheit.  I take this with me when she goes inpatient.  The nurses only speak celcius and their printed conversion charts don't go cold enough to translate Ellie's low body temps... haha!  I will post the printed chart on her wall in her room.

Bair Hugger
I looked extensively at trying to get a bair hugger like they have at the hospital or warming lamps.   But I was unsuccessful.  What I found out was they are regulated by the FDA and can only be sold to medical facilities.  There is not even a way to get one from DME/Homecare.  THey cannot be used in the home.  The one workaround idea I found (but never did) was that vetrinarians also use baer huggers and these ones are not regulated by the FDA.  As far as I can tell you should be able to purchase one made for a vet.  ha ha!

Other warming options
You can warm up their formula and put it into their belly.  Just make sure it is not too hot.  This would be like drinking hot chocolate when you are cold.  I have done this before, but do not do it regularly.

There are also warming beds and cushions and vests  I have not tried any of these.  Here are some examples...

Warming Bed (aqua bed) https://www.amazon.com/Aqua-Bed-Warmer-Non-electric-Blanket/dp/B00O145IUI?th=1

Lots of aftermarket massaging heat cushions for cars have a heat function 

You can always use microwave rice bags or hot water bottles too...but they tend to be small.

There are also electric mattress pads...but due to peeing accidents these have not been a good option for Ellie.


What other questions do you have?  What have you found helps you when you are cold?  Comment below.  Like our FB page for future posts.  https://www.facebook.com/SupportedInOurTrials/

How to find nurses for Private Duty Nursing (Night Nursing)...In Utah at least

So, Medicaid has approved Private Duty Nursing (Night Nursing)...NOW WHAT?

Or Maybe...your current Home Health company is unable to provide 100% coverage for your Private Duty Nursing...NOW WHAT?

Medicaid does not have preferred providers for PDN (Private Duty Nursing).  Any agency who is willing to accept the small amount medicaid is willing to pay, is fine with medicaid.

Here is what I am currently doing to find better coverage (I was previously only getting about 3 nights per week covered).  I googled home health agencies in Ogden.  I wrote down their phone number and address.  A few months ago I tried calling each of them.  It was a lengthy process.  And did not yield any success. 

Medicaid told me that you just have to call each of the agencies each month and see if anyone has openings because nursing staffing can change month to month.

This time around I decided to take a different approach...I wrote a letter listing out all of the information I knew they would want to know and asked them to contact me if they were interested in providing services.  I mailed it out to all of the local agencies.

As a side note...my particular Medicaid (Healthy U) is willing to do a split authorization due to the nursing shortage.  This means that 2 agencies would provide services.  So for example...one agency could provide night nurses Mon-Wed and another agency could provide nurses Thurs-Sun.  Or whatever configuration works out.  Agencies do not love doing this and some are not willing to do it at all...but some will.

****************************

Here are the agencies in my local Ogden UT Area (at least that came up on Google)

Ivy Lane Pediatrics

115 Historic 25^th St #2

Ogden UT 84401

801-774-9698

Canyon Home Care and Hospice

450 S. 900 E. #100

SLC UT 84102

801-485-6166

 Encompass Home Health and Hospice

5478 Adams Ave Pkwy

Ogden, UT 84405

801-392-8880

 Horizon Home Health

72 W. Gentile

Layton UT 84041

801-294-8600

Harmony

5650 S. Green St.

Murray UT 84123

801-264-8000

Bright Star

5320 S. 900 E. #280

SLC UT 84117

801-559-3999

Salus

7001 900 E. # 300

Midvale UT 84047

801-352-7358

 Right at Home

1496 E. 5600 S. Unit 6

South Ogden UT 84403

801-479-7026

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Here is the letter I sent to each company, we will see how it works...

3/27/18

Dear Home Health Company,

I am looking for new Night-time Private Duty Nursing for my 16 YO daughter.  Do you meet the following criteria?

Offer pediatric PDN services?

Offer services in Ogden?

Have nurses available to meet night-time shifts/or can hire new nurses?

Willing to take payment from Medicaid Healthy U for PDN services?

If you answered yes to those 4 questions, keep reading to see if we will be a good match.

Hours

We qualify for 8 hours of night-time private duty nursing per night on the acquity grid paid for by Medicaid Healthy U

These hours can be an LPN or an RN

Sun, Mon, Tues, Fri, Sat would be 8 PM-4 AM

Wed would be 8:45 PM-4:45 AM

Thur would be 8:30 PM-4:30 AM

Hours could be tweaked slightly if nurses have different needs

Location

We live in Ogden

Client/Patient

My daughter _________ is almost _______ years old. 

She weighs 60 lbs.

Medical Needs

We do not have a lift in the home…we will within a few years…when we remodel our bathroom.

So nurses need to be capable of lifting 60 lbs.  Such as from her elevated “sleep safe” bed to her wheelchair or from the bed into the elevated bath chair.

She has a G-tube and is on continuous feeds with a feeding pump.

She gets meds by G-tube.

She would be cathed twice on the night shift.

She wears braces on arms and legs at night.

She gets multiple breathing treatments and suctioning before bed.

She uses bi-pap and oxygen during the night

Her temperature needs to be monitored due to dysautonomia.

She needs to be bathed in the shower several times per week.

She requires diapering

She gets enemas

She needs range of motion stretching done

She needs position changes to avoid pressure sores.

She is non-verbal and non-ambulatory

She cannot talk verbally, cannot sit up, cannot hold up head, cannot roll over

Preferences

I only want female nurses

Your company needs to have pediatric clients or be currently branching out into pediatric…they are completely different that geriatric.

We also have 1 small dog (Schnauzer mix)…in case nurses have allergies.

Insurance

We have_________ Insurance as Primary (they will not pay anything towards PDN)

Medicaid Healthy U is our secondary insurance.  So you need to be willing to accept the payment that Medicaid is willing to offer.

Her Medicaid number is _________________

Our PDN backstory

We have been approved for PDN since about late summer 2017.  We were using _____________Home Health (since they also provide the school nurses for my daughter).  I only ever got 3 nights per week covered with them.  They were never able to hire enough nurses to provide us with better coverage.  Ivy Lane was audited by the state and were told they needed to provide better coverage than 3 nights a week for their clients.  So Ivy Lane will be discharging us as of Apr 14, 2018 in order to give their remaining clients better coverage. 

Please contact me if you are interested in serving us.  We are also willing to do a split authorization if necessary.

Sincerely

My Name

Me cell number  (text or voice call OK…but no messages)

My email

Where to advertise to find respite workers (DSPD or Private Pay)

My links are specific for Ogden UT...but you may be able to get some ideas.

I make a flyer saying "Heavy Medical Emphasis", "No Experience necessary" and "Paid Training Provided".  I post this on Facebook as Public and ask people to share.  I also print this and post it at my local LDS (Church) Institute bulletin board.

This could also be posted on KSL Classifieds and other job search sites...but I do not do this.

You could also post at local grocery stores and restaurants...but I do not do this.

I also make a 2nd flyer saying I am looking  to hire a "CNA or Nursing Student".  This one I send out to the local university (Weber State) nursing department and the local Tech schools that offer CNA and other nursing degrees.

When I tried using my flyer that did not specifically say "CNA or Nursing Students"...the schools and teachers did not want to advertise for me.  So although I don't care if they are CNA's or nursing students...it is how I get the teachers to advertise.

Have you found other ways to find respite workers?  Please comment below with any suggestions you might have.  Remember to like our FB page to see future updates.  https://www.facebook.com/SupportedInOurTrials/

Here are my contacts... (I just email them the file and ask them to email it out to students or post it on any bulletin boards).

Weber State Nursing

Msimmons1@weber.edu

Nightingale College of Nursing

jlowe@nightingale.edu

OWATC

(Student success center)
Jamie.Smith@otech.edu

DATC

Keith.collinwood@davistech.edu

or you can post on their job board

 http://www.davistech.edu/jobboard

University of Phoenix

Instructions for their job board

Phoenix.edu/phoenixlink

Click on Employer

Signup and post job (or new employer signup)

General Conference (and other church talks) about trials

Here is a list of LDS church talks that deal with trials

Richard G. Scott

"Trust in the Lord"

Oct 1995

https://www.lds.org/general-conference/1995/10/trust-in-the-lord?lang=eng

Jeffrey R. Holland

"Living After the Manner of Happiness"

BYU-Idaho Devotional

http://www.byui.edu/devotionals/elder-jeffrey-r-holland

Christopher Waddell

"Turn to the Lord"

Oct 2017

https://www.lds.org/general-conference/2017/10/turn-to-the-lord?lang=eng

Jeffrey R. Holland

"The Ministry of Angels"

Oct 2008

https://www.lds.org/general-conference/2008/10/the-ministry-of-angels?lang=ase

Donald L. Hallstrom

"Has the Day of Miracles Ceased?"

Oct 2017

https://www.lds.org/general-conference/2017/10/has-the-day-of-miracles-ceased?lang=eng

Dieter F. Uchdorf

"Fourth Floor, Last Door"

Oct 2016

https://www.lds.org/general-conference/2016/10/fourth-floor-last-door?lang=eng

Teachings of Presidents of the Church: Spencer W. Kimball
"Tragedy or Destiny"
Chapter 2
https://www.lds.org/manual/teachings-spencer-w-kimball/chapter-2?lang=eng

Russell M. Nelson
"With God Nothing Shall be Impossible"
April 1988
https://www.lds.org/general-conference/1988/04/with-god-nothing-shall-be-impossible?lang=eng

Neil L. Anderson
"Trial of Your Faith"
Oct 2012
https://www.lds.org/general-conference/2012/10/trial-of-your-faith?lang=eng

Jeffrey R. Holland
"Come Unto Me"
Ensign April 1998
(Adapted from CES Young Adult Fireside March 2 1997)
https://www.lds.org/ensign/1998/04/come-unto-me?lang=eng

James E. Faust
"Refined in our Trials"
Ensign Feb 2006 First Presidency Message
https://www.lds.org/ensign/2006/02/refined-in-our-trials?lang=eng

Jeffrey R. Holland
"Be with and Strengthen Them"
Apr 2019
https://www.lds.org/general-conference/2018/04/be-with-and-strengthen-them?lang=eng


*************************************

Do you have any other talks that you love about trials?  Please comment below.  Please like our FB page to see updates like this.  https://www.facebook.com/SupportedInOurTrials/

Switching over to the new enfit system ( gtube feeding)

I made a video showing how the new enfit system works, how to prepare for the transition.

I added a little more information with a 2nd video showing an adapter that will allow you to use oral syringes (free from your pharmacy) with the ENFIT extentions.

Here are some additional adapters that can be used with enfit (scroll down on page)
https://www.appliedmedical.net/enfit/

Here is a page showing different enfit connectors and extensions etc...
https://www.appliedmedical.net/wp-content/uploads/2014/12/ENFit_EU_OneSheet_V1.pdf

Here is a video showing enfit transition adapter choices
https://www.youtube.com/watch?v=OH8Ay9k-mpU

Medicaid might pay for night nursing

Usually night nursing is requested by discharge planning after you have been inpatient.  But it does not have to happen that way.  You can request to be evaluated yourself.

The nursing I am talking about is in addition to any respite hours you get such as from DSPD or MCCW.  You can have both respite and nursing.  They do not affect one another.  If you get approved for night nursing it WILL NOT lower your repsite.

If you have Medicaid, here are the steps I would take to see if you qualify...(I live in Utah, so I don't know how it works other places, but please comment below and let us know).

#1) Call Medicaid (which ever you have...such as Healthy U, etc).  Tell them you would like to look into getting night homehealth nurses.  Ask them which Nursing Agencies are on their approved list.

#2) Call one of the Nursing Agencies and ask them to come do an "Acquity Grid" for you because you would like to try and get approved for night nursing.

#3)  Make a list before they come out of all of the medical tasks that need to be done and how often they need to be done.  Make it sound as bad as possible.  Tell the truth, but lean towards when your child is really sick and not doing well at home.  When making the list make as many tasks be during getting ready for bed and during the night-time hours as possible.  So if you normally bathe them after school...list it as getting ready for bed.  This is a task that the nurses can do for you.  Same with meds and braces and range of motion etc.  Write them down as getting ready for bed and night-time tasks.

#4)  The Nursing Company will come out and do the Acquity Grid and submit it to Medicaid.

#5)  Several things they will want when they come out (other than your list of night-time tasks)...list of diagnosis, list of Dr.'s (names and type of specialist is fine), medications (name, dosage, reason for taking, times given).  And what hours you would want (I will talk about this below).

#5) If you do not hear back from Medicaid and/or the nursing company within a reasonable amount of time, follow up with them.  It took me 2 tries to be approved.  Somehow the ball was dropped the first time.

As soon as the acquity grid is filled out the nursing agency should be able to tell you immediately how many hours you should be approved for.  They will then want to know which hours you would want.  So with our acquity grid score we came out to 8 hours per night.  The nursing agency wanted to know right then what 8 hours I wanted.  They have to report this to Medicaid.  For some reason this is a really big deal to them.  I chose 8 PM-4 AM so that I could count all of her getting ready for bed things on her acquity grid.  If I had them come from 10 PM-6 AM then she would already be in bed and most of her medical things would already be done.

They will only do straight shifts and they must be during the night.  So even though I would rather have (2) 4 hours shifts, I have to have (1) 8 hour shift.

Once your nurses start working make sure they are doing and reporting the tasks that you get points on the acquity grid.  These reports are sent to Medicaid.  If those specific tasks aren't getting done, then you could lose services.

Here are some of the things I get points for on the acquity grid...Breathing treatments (vest and nebulized meds), suctioning, seizure monitoring, wearing braces, range of motion, giving g-tube meds and feeds, bath, monitoring vitals and oxygen, using oxygen when needed, cathing, bipap at night.

I am not sure if you can get a high enough score without bipap/cpap or trach.  But it can't hurt to try.  Let us know how it goes for you.

Here is a sample acquity grid that I found when I googled...I do not know if it is the most up to date.  But it will give you an idea of things that earn you points.
https://medicaid.utah.gov/Documents/pdfs/Forms/PDN-Grid(printable)4-13.pdf

Just as an FYI there is a nursing shortage so even if you get approved you may not actually get nurses.  I have been approved for over 6 months for 8 hours each night.  On my schedule next month I have 17 covered nights.  My friend that is with the same company has 7 covered shifts next month.

Please comment with questions or experiences below.

Please like and share our FB Page to see future posts.  
https://www.facebook.com/SupportedInOurTrials/

General Conference talks about disability

I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last."
https://www.lds.org/general-conference/2013/10/like-a-broken-vessel?lang=eng