Phone estimates on 2 different styles of van modifications to give you a general idea. The approximate quotes include parts and labor. Phone estimates gotten from Mobility Solutions in Salt Lake City Utah in July 2018.
Full size van with lift $7,500
Tiedowns $2,000
Braun Entervan conversion on minivan with lowered floor, side-entry ramp (not in-floor) and tie-downs $26,000
Wednesday, September 5, 2018
Saturday, July 14, 2018
What to look for in an Adapted Van (Wheelchair Van)/ Understanding adapted Van Terminology
Navigating the world of purchasing a wheelchair accessible van can be confusing, overwhelming and expensive...haha. I will attempt to break down some of the terms that people use and some of the things I think are best to look for in purchasing a van.
When a van is modified (changed) to be wheelchair accessible it is called "modified" or "adapted" or "converted" or "accessible" or "wheelchair accessible".
I am only covering the topic of staying in your wheelchair to travel...there are other options if you are able to get out of your wheelchair and into a vehicle seat.
Minivans typically have ramps and full size vans have lifts.
The 2 most common brands of lifts/ramps are Braun and Ricon. Braun is typically used in minivans. Ricon is typically used in commercial applications (like public transportation) and full size vans.
A ramp is at a 45 degree angle coming out the side or rear of the van. Here is an example of a ramp.
A lift comes out of the van and stops parallel to the ground. It then lowers to the ground. The person then gets on the lift and is raised up to the level of the van floor. Kind of like an elevator. Here is an example of a lift.
An "in-floor" ramp means that the ramp gets stored in the floor of the van. The advantage to this is that when the ramp is stowed (put away, ready to drive) it is not blocking ANY of the doorways. A "fold-out" ramp will block a doorway. An in-floor ramp is preferred, but probably less common. I am assuming it costs more. Here is an example of both.
 |
| This ramp will block the doorway |
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| Manual Ramp |
A lift can be solid or a "split-gate". (remember lifts are on commercial and full size-vans). A solid lift will block one of the doorways when it is "stowed" (put away, ready to drive). A split gate will split in 2 when it is stowed so you can still use the doorway. It is awkward, but still leaves an opening. If possible I like split-gate better, that way kids or things can still get in and out through the door. Split-gate are much harder to find. You can tell that they are split gate because you can see that the lift is split into 2 halves. Here is an example of both.
 |
| Splitgate LIFT parallel to ground |
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| Split-gate LIFT in "stowed" position |
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| Split-Gate LIFT on ground |
 |
| Solid LIFT blocks doorway |
 |
| Solid LIFT blocks doorway |
 |
| Rear-entry Ramp |
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| Side-entry ramp |
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| Rear Entry Ramp with fold-up seats |
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| Side-Entry Lift |
 |
| Rear-entry lift |
When looking at lifts and ramps, look at backup plans. How do you over-ride the lift to use it manually if there is loss of power or mechanical failure.
Braunability, AMS(Adaptive Mobility Solutions), Entervan, Activan, VMI (Vantage Mobility International) are all systems that companies have designed. Basically your local adaptive van place goes to these training facilities (Braunability for example) and go to classes to know how to adapt a van correctly. They then come back to their local adaptive van place and can adapt vans to those standards and can place the label of "Braunability" or "Braun Entervan" on the adapted van. Things that they learn would be structural safety, best design practices for ease of use for wheelchair users, electrical wiring, how to aesthetically make if look good inside and out. So if you see any of these terms you know it is a good and safe conversion. It means the conversion was done by someone who had specific training.
Tie-downs consist of 3 parts. Anchors (usually 4) in the van. Tie-down's on the wheelchair itself (usually 4). Straps that connect the van tie-downs to the wheelchair tie-downs. All three of these parts are collectively OR individually called tie-downs. When getting a wheelchair make sure to ask for tie-downs (sometimes called a "transportation option" or "Transportation package". One popular brand of tie-downs are called Q-straint. Here are some examples of van tie downs. Some tie-downs are fixed in 1 location (like the first pic). Some tie-downs have a track (like pics 2 and 3) and can be adjusted in different locations for different needs. (I prefer the tracks if possible).
Tie-downs can have a housing where the straps are stored. This would mean they have some type of "retractor". It might be automatic, semi-automatic or manual. In the first pic below is the semi-automatic retractor. It is a red button that will pull the excess strap tighter. In the 2nd pic is a manual tie-down, you have to pull it tighter with your own muscles.
Manual tiedowns are cheapest. One advantage however to one with a retractor is that it gets the straps all contained and more out of the way.
 |
| Semi-automatic Retractor (red button) |
 |
| Manual tie-downs |
If a van comes with hand controls it means the van can be completely driven without your legs or feet. You can do the brakes and gas and steering all with your arms/hands.
 |
| Hand Controls |
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| Hand Controls |
There are many configurations of van seating. Where do you want the wheelchair user to sit inside the van? Are they the driver? or front passenger seat? or rear of van? or right behind driver? Window shop at adaptive mobility shops to see different configurations and go look at some vans for sale near you to figure your ideal configuration out. Here are some examples.
 |
When shopping for adapted vans, consider full-size vans vs mini-vans. A full size van can be anywhere from 7-15 passenger. It is larger than a mini-van. It would be like a Ford e-series (Ford e350 for example) or a Dodge Ram or a Dodge Sprinter or a Mercedes Sprinter or a Nissan NV etc... Toyota and Honda do not make a full-size van.
 |
| Full-Size Van |
 |
| Mini-van |
Advantages to a full-size van are #1) you can fit more people #2) more room around the wheelchair to do the tie-downs #3) more room around each passenger #4) if it has a raised roof you can stand upright inside the van #5) more cargo space #6) not required to raise the roof or lower the floor like a minivan #7) modifications are often cheaper if you choose not to raise the roof or lower the floor.
Advantages to minivan #1) A lot more on the market (easier to find) (unadapted mini-vans) #2) easier to drive and park and reverse #3) usually have a sliding door on each side, so kids aren't banging cars next to the vehicle with the door and if you block 1 doorway with a ramp, you have a door on the other side.
In order to make a minivan accessible they almost always need to have a lowered floor or a raised roof. Usually people opt for a lowered floor. A lowered floor (from the outside of the van) aesthetically looks more like a normal mini-van. Making the lowered floor or the raised roof is really pricey.
 |
| After-market raised roof on full-size van |
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| After-market raised roof on mini-van |
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| Lowered floor on mini-van with rear-entry |
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| Lowered floor on mini-van with side entry (notice the sliding door and whole side of van is lowered in addition to floor inside) |
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| Lowered Floor |
Although full-size vans do not have to have a raised roof or a lowered floor, several full size vans come with a raised roof from the factory such as the Sprinters (Sprinters come in 3 roof heights), Ford Transit (not Transit Connect, they are short in length like a minivan), some newer Dodge Ram's. The raised roof from the factory is often called a "high top" or "high roof". The advantage to a raised roof is being able to stand up inside the van. If I need to move my child from her wheelchair to a bench to change her, it is much much much better on my back if I can stand up straight rather than carrying her while hunched over.
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| Sprinter has a raised roof (high top) from the factory |
The majority of people I know have bought their adapted vans on ebay. Yes, you buy them sight unseen and yes you have to drive or fly to bring them home or pay to have them shipped. But you have a much bigger selection and can get better prices. It is also a great way to compare prices of similar vehicles. Because you cannot look up adapted vehicles on Kelly Blue Book unfortunately. I personally only look at the "buy-it-now prices". You may be able to get a van cheaper through the auction, but it is too much for me.
To do an ebay search I will typically
#1) put into the ebay search bar "wheelchair van ramp" or "wheelchair van lift". If there is a make I want I will add that also. Such as "Honda wheelchair van ramp".
#2)Once the search comes up I will select "Buy it now".
#3)Then I will select "sort" and choose "Price + Shipping: Lowest first"
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Here is another blogpost I wrote about how to pay for a modified vehicle.
http://supportedinourtrials.blogspot.com/2016/05/paying-for-wheelchair-modified.html
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What did I miss? What advice do you have for people looking for an adapted van? Please like my FB page to see future posts https://www.facebook.com/SupportedInOurTrials/
Tuesday, July 3, 2018
How I make IEP's better
I make appointments to come and observe each of the school therapists individually working with Ellie...the way that they normally do. This is no small task. Ellie has PT, OT, Speech, Vision, Deaf-Blind Consultant and an Intervenor.
After I observe them, I ask how Ellie is doing on her current goals and allow them to report. I ask them to tell me Ellie's accomplishments (not short-comings). I do not go over every goal with each therapist...only the goals that mainly apply to them.
We then discuss whether we want to keep goals the same or get rid of them or alter them or add to them etc... This is where I typically will make my suggestions of what I want her goals to be.
Something that is really helpful is to think ahead of what you want the child to be able to do in 5 years. Tell the therapists these 5 year goals. Then you can figure out the steps to help them get there.
These first meetings take about 2 hours each so I make sure the therapist has that much time set aside.
I feel like these one-on-one meetings are good for us because when we used to try and have all the therapists sit down together...there were too many cooks in the kitchen. We got really side-tracked and there were just too many opinions and the meetings were super long.
Once we have narrowed down what we want the goals to be, the therapist agrees to write the goals that pertain to their area of expertise and they email them those particular goals to me. I go over the goals with a fine tooth comb and send back suggestions to that particular therapist. We email back and forth a few times until we have the goal pretty good.
After I have met with everyone individually, we have what I have termed a "Pre-IEP".
This is a meeting with all of the therapists and the teacher and the parents and the student. The teacher has compiled a list of all the goals together, numbered them and has a copy for each person. The school administrator is NOT at this meeting. I think it is important for the student to be at each meeting...these are their goals. I think having the student there helps remind people that these goals are for a person...not just goals on paper.
We go over all of the goals so everyone knows all of the goals. We discuss how different therapists can incorporate other goals into their specialty therapies. For example if speech has written a reading goal, we might make suggestions to the OT of how they could incorporate the reading goal with her OT goals. We make more changes to the IEP. This is the longest meeting it takes up to 3 hours.
The teacher then takes her marked up copy with all of the changes and the meeting is done. The teacher makes all of the corrections on the computer.
The teacher sends me home a hard copy a day or 2 later. I look over it and make any final adjustments and send it back.
Then we have the real IEP. All therapists and parents and the student and the school administrator are present. We read through the IEP. We have virtually no changes. We sign the IEP. THis meeting takes less than an hour.
Done. (For another year).
One thing I have had to come to realize is that the teachers and therapists ARE NOT THE ENEMY! They are in this profession because they love the kids. They want to help. They are not in it for the money or the fame. Compliment them, praise them, bring them treats (to the IEP also), you want them on your team. POUR ON THE HONEY...not the Vinegar. Try to truly listen to what they are saying and try to calmly help them understand what you long term desires are.
One last suggestion. Sometimes it doesn't hurt to throw them a bone. Almost every year I will "cave" on something. Usually it is something small. I will say, "I don't think she will be able to do this, or this is not my favorite goal" or something. But I add, "I am willing to give it a try for 1 year". I feel like if I am willing to bend, they are more willing to bend also. I get 95% of what I want and they are happy because they get what they want also.
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Tuesday, June 19, 2018
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
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
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.
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.
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/
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/
Wednesday, April 4, 2018
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)
Encompass Home Health and Hospice
Horizon Home Health
Right at Home
********************************
Here is the letter I sent to each company, we will see how it works...
Client/Patient
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 25th St #2
Ogden UT 84401
801-774-9698
Canyon Home Care and Hospice
450 S. 900 E. #100
SLC UT 84102
801-485-6166
5478 Adams Ave Pkwy
Ogden, UT 84405
801-392-8880
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
1496 E. 5600 S. Unit 6
South Ogden UT 84403
801-479-7026
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
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).
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
Nightingale College of Nursing
OWATC
(Student success center)
Jamie.Smith@otech.edu
Jamie.Smith@otech.edu
DATC
or you can post on their job board
University of Phoenix
Instructions for their job board
Phoenix.edu/phoenixlink
Click on Employer
Signup and post job (or
new employer signup)
Saturday, February 17, 2018
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
Jeffrey R. Holland
"Living After the Manner of Happiness"
BYU-Idaho Devotional
Christopher Waddell
"Turn to the Lord"
Oct 2017
Jeffrey R. Holland
"The Ministry of Angels"
Oct 2008
Donald L. Hallstrom
"Has the Day of Miracles Ceased?"
Oct 2017
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
*************************************
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/
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