Huggies

Parents often run into a problem when they start getting diapers paid for by medicaid.  Homecare will ship you out generic diapers.  This is where the problem comes in.  Generic diapers are simply not as good.

Homecare can often order you nicer diapers (Huggies for example).  But you need your Dr. to write a prescription stating huggies are what he is ordering.  He cannot just say diapers or you will not get the huggies.

I know that IHC Homecare in Utah has the capability of ordering Huggies for you.

Have you had success getting name brand diapers paid for?  What companies have you used?  Do you have any other suggestions for other readers?  Please comment to benefit other parents reading.

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Keeping the Pulse Ox Probe in place

Ellie uses a continuous monitoring pulse ox during the night and when she is sick.  There have been nights when we stumble out of bed because of incessant beeping and we are madly increasing oxygen, suctioning, rubbing her chest, etc to get her to breathe and get her sats up.  Then we realize...the pulse ox is not attached and yes, the carpet's oxygen is maintaining a steady 68.  Ha ha.

To resolve this problem we tape the pulse ox probe in place.  We have found that if we leave a little bump in the probe wires (not pulling it tight against her skin) it stays on better and the probes don't wear out as fast.

We prefer the non-sticky probes (we like the velcro kind) they seen to last A LOT longer.  Ellie does not move a lot, but our probes last anywhere from 1-3 months.  I think the more your child moves the faster they wear out.

We use mefix.  Ellie is really sensitive to adhesives, but the mefix does not bother her at all.  I cut up a whole roll at a time and have a little stack of pre-cut mefix ready to go.  There are even lines on the mefix that I cut on that make it the perfect length for this purpose.

On a slightly different note.  I was told when she was little that red fingernail or toenail polish could affect the pulse ox reading.  I have never found this to be the case.

How do you keep your pulse ox probe in place?  What tips do you have for getting an accurate reading?  Please "like" our FB page for more posts about raising a child with severe disabilities.  https://www.facebook.com/SupportedInOurTrials/?ref=aymt_homepage_panel

Packing list

Do you ever take your child with special needs on vacation or camping?  It is a TON TON TON of work.

Ellie uses bipap, oxygen, suction, pulse ox, feeding pump, is cathed, uses a wheelchair, and on and on.  Trust me...I know how difficult it can be. Not only is it hard physically, but I have a hard time committing emotionally.  I have had multiple occasions where vacations have been changed, delayed or cancelled completely due to changes in medical status.  

One thing I have done to lighten my load slightly is to have a packing list saved on my computer to pack for Ellie to go on vacation.  Iwrote it as a camping list, but it is virtually the same list to go to a hotel...but we can leave off the generator and a few other things.  

Some of the things I'm sure only make sense to me...so feel free to ask questions of how we do it, why we do it, why we take certain items etc.

I have found over the last few years that it is easier to pack Ellie's things in the same size of clear bins.  You can see what is inside, group like things and they stack nicely in the car and in the hotel room.

I put each container on a separate sheet of paper on the list to clarify what fits and goes inside of each bin.  I like to group like things such as her nebulizer items go together and her clothes go together.

Her "emergency med bag" is her emergency meds that are always on her wheelchair.

Her "med go bag" is a large cosmetic bag I keep stocked with syringes, water, pill crushers, etc.  In one pocket and an empty pocket that I can shove all her meds into if I need to grab them and go somewhere.

Box 1 is formula supplies

Box 2 is Breathing  (nebulizer, suction, oxygen) and Hygiene

Box 3 is Cathing and Sanitizing/Cleaning

Here is a link to Ellie's packing list that you can look at as an example.  This list would obviously be different for your own medical needs and circumstances, 

https://www.dropbox.com/sh/0gfmeeels33ib7d/AACg7gtQdw5Ii66jF1-pzIYca?dl=0

What tips and tricks do you have for packing to go on vacation or camping?   Please share with us below.  Please visit our FB page and like it to see future posts like this one.

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Instant Info About Meds

There are some things you can know about meds instantly that you may not have realized.

For liquid meds...
If it is transparent (you can see through the liquid) you do not need to shake it.
If it is opaque (you CANNOT see through it) you will need to shake it first.

For ampules (for nebulizer)...
If they come in a foil pouch, then you will need to protect them from light.
It they come in the box (but no foil pouch), then there is NO NEED to protect them from light.

Do you have any other "Instant Info About Meds" you can share with us?

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Sleeping with eyes open or using cpap

Since this blog is about lessons I have learned...some things I have to confess I am kind of embarrassed about.  But I am hoping by sharing that you won't have to learn the same lessons I did.

My daughter has always slept with her eyes partially open.  In addition to that she has also used bi-pap for 13 years.

I didn't think sleeping with your eyes open was a big deal, and for a typically developing person, it probably isn't.  For non-medically complex people they still rub their eyes and can tell if their eyes feel really dry they would complain about it.  With Ellie, this is not the case.  She cannot bring her hands to her face and is non-verbal.

At her most recent eye exam the opthalmologist said that she had permanent scar tissue on her iris (colored part of her eye).  She asked if she slept with her eyes open, I said yes.  She said the scar tissue was caused by this.  She said she should be okay, but if the scar tissue extended into her pupil (black part of eye) she would have vision loss in that area.  That's all we need...more vision loss (insert sarcasm)!

The eye Dr. said we needed to get "eye gel for SEVERE dry eyes".  The brand pictured above is what we have been using.  We just squeeze a little into each eyes before bed.  It is available over-the-counter.  I believe it was around $10 for a tube?!?!?!

I wish we would have been warned before so we could have avoided eye damage...but that is life with a medically complex child.  Consider yourself warned.

Does your child sleep with their eyes open?  Do you have any experiences you can share with us?  We would love to hear from you!

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Paying for a wheelchair modified van/lift/ramp

(These resources are for Utah)

Rebates from Car Manufacturers on a new vehicle
If you buy a new vehicle from the dealer and modify it, a lot of dealers will give you a rebate.  Here are a few examples.  https://www.ride-away.com/manufacturer-mobility-rebate-programs/

Assistive Technology Foundation (Zions Bank Low interest loan)
1-800-524-5152
http://www.uatpat.org/
Here is another link to the same program http://www.uatf.org/financing/
You turn in the application and they help you get a low interest loan through Zions bank.  The loan will be 1/2 of prime and the Foundation pays the other half of the interest.  They will help pay for a vehicle and/or modifications.  The vehicle does not need to have the lift/ramp already installed.  For loans over $10,000 you can usually get a 5 year term.  It takes about 1 week for the loan to go through once all of the paperwork has been submitted.  Once the application is complete it is good for 90 days (you have 90 days to find a vehicle).  You can use the loan more than once.

Independent Living Centers (locations throughout Utah...each county has a designated one)
http://www.usor.utah.gov/division-of-rehabilitation-services/vocational-rehabilitation/independent-living-il/centers-for-independent-living
They will pay to modify a van with lift/ramp/tie downs/etc.  They will not pay for the van itself.  They will only do modifications on a van that is 1 year old or less.  They have a long waiting list.  They get money each July, but you will need to apply well before that.  

Angels Hands 
https://angelshands.org/
It sounds like they may help with the purchase of the actual vehicle.

I sent the following question to Angel's Hands...

Do you help pay for a wheelchair modified vehicle?

This is the response I received...

Mikael,

Thanks you for your inquiry. Angel’s Hands Foundation’s mission is to improve the quality of life for individuals with rare or undiagnosed diseases. If you believe you fit into that mission, the following steps are required:

1. The family must register with Angel’s Hands by completing the online ‘Registration Form’ under the AHF Forms tab.

2. A request for assistance must be submitted by completing the online ‘Assistance Request Form’ under the AHF Forms tab.

a. Proper documentation must be attached to the form or mailed within 30 days of request.

The request will be screened and submitted to the board for consideration.

Thanks,

Dennis

Steelman Family Foundation

Helps pay for modifying vans.  Does not often pay for the van itself.  Has certain requirements that the van must meet such as..vehicle must be the current body style and under 50,000 miles.  Rear entry is available up to 80,000 for some vehicles.Has an open application period.  In 2019 it will

open Nov 1, 2019.  https://steelmanfamilyfoundation.org

Contact your local Eagles/VFW/ Elks/Lions/ etc...  They are often looking for a good fundraising idea.

Create a GoFundMe account and'or have fundraisers to help raise money.

If you are on the DSPD waiver, they will pay to modify a van with lift/ramp/tie downs/etc.  They will not pay for the van itself. It takes several months to go through the approval process.

Karl Malone Foundation has purchased vehicles before.  

(this may be an inactive non-profit...it was difficult to track down online)

Karl Malone Foundation for Kids

Po Box 429

Bountiful, UT 84011

How have you been able to pay for a wheelchair modified vehicle?  Do you know of any other resources?  Please comment below.

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Pulling out tubes, etc...

If your child is capable of pulling out NG tubes/IV lines etc, you may want to invest in some "no-nos" otherwise known as pediatric arm immobilizers.  Here are a few examples...

http://www.medi-kid.com/index.php?p=catalog&parent=1&pg=1

I have used the pedi-wrap brand for both arms and legs on Ellie.  They do not seem too uncomfortable.

They are also good to give a good long stretch (such as overnight) for kids who have tight arms and legs.  If they have a hard time sleeping with them, try putting the braces on every other night alternating on every other side.

What have you tried to keep your kids from pulling out tubes?  Please comment below.

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