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.

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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

72 Hour kit for a medically complex child (Bug Out Bag, how to evacuate)

I was recently asked this question and will attempt to answer it...How do you pack a 72 hour kit for your special needs child? Children with complex medical needs have so much stuff and can't carry their own backpack. How can the parent push the wheelchair, have their own backpack,carry all of the special needs child's gear and still be able to move?

It is seriously a hard one.  

First...attempt to shelter in place (stay at home).  Do you have food, water a generator (if needed for machines) and gas for generator?

Second...attempt to bug out (evacuate) by vehicle.  You still need a 72 hour kit packed for everyone including your special needs child, but at least it will be easier than walking somewhere.  Do you have a plugs in your car or a car inverter that can run your child's machines?  Do you keep your tank half full at all times?  (I don't...ha ha!).

Third...Bug out on foot (or by bike).  This is the one I am going to focus on...

If you are LDS, your ward should have a written emergency plan (each ward is supposed to have one).  Talk to your Bishop and counselors and Elders Quorum Pres and Home Teachers.  Ask to be included specifically on the written emergency plan.  Ask each of them that in case of emergency, as soon as they can get their families settled, to please send help.  Tell them that you will need help getting all of the necessary medical equipment evacuated.  If you are not LDS...talk to your neighbors.

We usually have about 1 day of supplies in her "Go bag" on her wheelchair with her at all times.

To build your 72 hour kit...just get started.  Know that it won't be perfect to start...but isn't it better than what you currently have?  Get a large Rubbermaid Bin (the heavier plastic kind).  Take a few hours and go through your child's daily routine and your spare medical supplies.  Pull out enough for 3 days (if you can spare it).  On top of the bin tape a paper that lists things you would still like to add to the kit.  Also tape a list of things you would grab at the time of evacuation (things you can't have packed up all of the time).

I keep this bin in my big van (the one with a lift that we use for Ellie) at all times.

I am currently revamping my 72 hour kit.  I think I will put her things in either 1 large backpack or a few smaller backpacks and then put the backpack in the bin.  The bin keeps kids from getting to it as easily and it getting stepped on but then you could pull the backpack out and wear it if needed.

I would really love to get a wheeled toolbox.  They are heavy duty and can hold a lot of things.  You can even lock them so your other kids don't get into them.  Here is an example. 

I am counting on my kids and hubby to wear their own backpack and then pull the toolbox.  Or in a real bind I could push the wheelchair and pull the toolbox.  (Come on...you know you've pushed the wheelchair and pulled a shopping cart before...ha ha!)

Some other ideas are a wheeled garden cart or a bike trailer.  We have a special needs bike trailer that could carry Ellie and a large backpacking bag (but it is not the most supportive for Ellie).  We also have a wheeled garden cart that Ellie can lay down on and we could squish a backpacking backpack on there too.  The wheels are not huge...but I think it could carry a lot of stuff in a  pinch.  Ours is about 2' X 3'.

If the terrain is rough we also have a large wheeled jogging stroller that we would use instead of her wheelchair.  Once again, it is not as supportive as the wheelchair...but for rough terrain it is the only way to go.

One last thought...Their stuff doesn't have to be in a backpack...a duffle bag or rolling suitcase might be easier.  A duffle bag could hang over the back of their wheelchair or a rolling suitcase would serve the same purpose as the toolbox listed above.

Advice to Dr.'s of rare or complicated or medically fragile kids

Dear Dr.

You cannot treat parents and patients the same if they have a rare diagnosis or are medically complicated.

I did a blog post touching on this subject a few years ago here.

Here is some additional advice for you dear Dr.

1.  Get to know the child as a person not a diagnosis.  Find out what they like.  Find out what makes them smile.  Who is their favorite person?

2.  Talk to the patient some of the time, even if they are non-verbal.  Don't always talk to the parent.

3.  Touch the patient in non-medical ways.  Touch their hand or their foot or wherever.  This shows compassion and that you see them as a person, not a patient.

4.  Compliment the parents.  Say "You know your child".  "You are doing such a good job".  "I trust you, you are so capable".  Parents are worried literally all of the time that we are not doing everything possible for our child.  We NEED to hear that we are doing well.

5.  Ask the parents what they think is wrong or if they have any guesses.  We have been around the block a time or two.  Even for our non-verbal kids we often have a guess as to the source of the pain, etc...

6.  Do not assume that you know more than the parents or the patient just because you are a Dr. Do not try and show off your knowledge.  We don't care.  We just want our child better. We have looked up more articles on our diagnosis and been to more specialists about our child than you have more than likely.

7.  Do not make up answers to our questions.  We would much rather hear you say "I don't know" or "I don't have an answer for that, but I will research it"

8.  Take notes.  Wrote down things you say you will do.  Make a written action plan as you are talking.  Then before leaving go over the action plan together with the parents.

9.  Know that parents are super tired physically and emotionally literally all of the time.  We live at levels of stress that most people only experience occassionally.  When we are grumpy with you please understand these things.  We are worried our child is going to die literally all of the time.  So when  new problem arises it stresses us out.  To you the patient is a diagnosis, to us they are our life.

10.  Offer your help.  Say "How can I help you today?"  or "What can I do for you today?"

Camping when you need power/Camping when you use oxygen

So you want to go camping, but your child uses machines or oxygen at night.  How do you get power?

My first suggestion is to camp in a place that has power.  There are lots of campgrounds that have power.  If you or someone is planning a trip this should be a top priority.  Tell the organizers they need to choose a location with power.

This may not always work out...but it makes life easier if it does.

I will split the rest of this article into 2 categories: Camping in an organized campground versus wilderness camping.

Power when camping in an organized campground
Organized campgrounds will usually make you turn off a generator at 10 PM.

1.  Often the camp host will have actual power (not generator) to their trailer spot or there will be power at the group site.  You can ask the camp host beforehand if they will let you run a long extension cord for your child's machines.  I have had them often say yes.

2.  You can put the generator far away from the camp sites and run a long extension cord back to your camp.  Ask your camp host beforehand.  Make sure to tell them it is for medical needs.

3.  You can buy a deep cycle marine battery (boat battery) and an inverter that hooks directly to the battery.  These are both available at the Walmart Tire center.  You will need to check power requirements of your machines and the power of the battery and inverter.  Inverters come in different power sizes.  Then you would need to charge up the battery with a generator during the day (when you can run the generator) and use the battery at night (since batteries are silent).  You can buy reliable and cheap generators at Harbor Freight.

4.  There are solar powered devices.  Once again you will need to check how much power you need and how much the device puts off.  A solar panel by itself will not help unless all of your machines have batteries.  If all of your machines have batteries then you can charge them with the solar panel during the day and run them at night.  If your machines do not have batteries then you need a solar panel and a battery.  There are many solar devices on the market.  I have been looking at one called "Goal Zero".  It comes in different sizes.  It is a solar panel and battery in one.  It is pricey, but looks awesome.  They are available online or at REI.

5.  For oxygen you can bring tanks instead of the concentrator.  Just make sure to calculate if you would need to change out the tank in the middle of the night.  If so, you may want to bring E tanks instead of D because they are larger.  There are approximate usage times on the side of each tank based on your flow rate.  You can also ask homecare to help you calculate this.

6.  You can borrow a portable oxygen concentrator from your homecare.  It is free and you don't need an extra RX to borrow it.  You just need to call homecare in advance and reserve it.  The portable oxygen concentrator has a battery.  You can also get extra batteries.  (I don't know how many extras you could get).  So you may need to charge the portable concentrator during the day and run it using it's battery during the night.  To charge the battery during the day you could #1) use a generator #2) use your car's built in inverter (double check that it puts out enough power) #3) buy a cigarette lighter inverter (check power before hand) #4) buy an inverter that hooks to a deep cycle marine battery (as described in #2 above)  ***note:  If using your car to charge things, make sure that the car is running so you don't kill the battery.  You may also need some extra gas for the car

7.  How far away from homecare will you be?  Could you bring half of the tanks needed and make a day trip into town to swap out your tanks halfway through your trip.  (Unlikely I know...but it can't hurt to look into all options)

Power while wilderness camping
In addition to suggestions 2-7 above you can do the following

1.  You can run a generator at any time of day or night.  They sell cheap and reliable generators at Harbor Freight.


What suggestions do you have for camping when you need power?  What has been successful or bombed?  Please comment below.

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Heal Diaper Rash

For kids who wear diapers their whole life...red bums are inevitable sometimes.

Here are some ideas to heal diaper rash once you have it...

#1) My number 1 tip is to let them be naked.  This keeps all moisture and acid off their bum and allows it to heal the very fastest.

#2)  If letting them be naked is not an option...use a cool temp hairdryer when changing them to completely dry the bum.

#3) Eliminate wipes while dealing with diaper rash.  if they are poopy, put them in the tub and rinse poop off with water.  (Optional) You can then let them sit in an warm oatmeal bath (put oatmeal in a nylon and tie top.  get wet and keep squeezing the oatmeal bag until the bath water is white.)  then when drying them off,  dab the bum with the towel instead of wipe.  Then let run or use the hairdryer tip.

#4) Mix equal parts of the following 3 things...
Maalox or Mylanta (cuts the acidity of the pee)
Lotrimin or Monistat (gets rid of any yeast or fungus)
Original Desitin (not creamy) (acts as a moisture barrier)
Seriously try it.

#5) Do not try to wipe all the cream off each time you change their diaper, this just causes more damage. Just leave it and slather more on.

Those are my tips, but here are some tips from other people...
Triple Paste from Walmart
Butt Paste
Bag Balm
Corona Cream
1/4-1/2 C. baking soda in a bath


What has worked for you?  Comment below

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