(Cue music) All my bags are packed, I'm ready to go...to the hospital

I keep a bag packed for myself (Ellie's Mom) at all times so I can grab it and head to the hospital.  I can get by without it, but it is nice to have.

Here are the items I like to take...

A carry-on size bag...mine has wheels and a telescoping handle...you could get by with any kind of bag

Meds needed.  My stomach, back and neck go bezerk due to stress in the hospital...lots of fun!

Feminine products in case I have a visit from my Auntie

A modest nightgown

Pair of sweatpants...I can wear them during the day or at night...sometimes both...ha ha!!!

A sweatshirt.  Sometimes it is freezing, like in PICU...brrr.

A t-shirt...useful for day or night

Flip flops...to wear in the shower...paranoid of athlete's foot

A large bottle I can fill with water to drink.  It is hard to leave your child's bed tons of times per day so that you can go down the hall to get yourself a drink of water.  This helps me stay hydrated.

Several pairs of socks to keep my piggies warm.

I also have a spare set of underwear.

It is nice to have a spare set of clothes so that you can use their laundry facilities to wash your clothes.  If I have time sometimes I will throw in a set of everyday clothes, but if not...I can get by with what I have packed.

Other things I bring for myself

I keep all of my hygiene (Makeup, brush, blowdryer, deodorant, etc...) in a separate bag all of the time at home.  I carry it to the bathroom and back to my bedroom.  This does 2 things #1) keeps the kids out of my stuff and #2) it is ready for me to grab at a moments notice.

I also bring my pillow.

And I grab my laptop with charger  (this is my distraction/hobby).  I can blog, facebook, check email, do digital scrapbooking, watch netflix, etc...

Phone and charger.

Exercise clothes and shoes.

My purse which has a special credit card for hospital purchases and health insurance cards.

I will leave my bags in the car while we go through the ED (Emergency Department) and while we get settled in our room.  Then at some point (sometimes not until the next morning) I sneak away and get my things out of the car.

I have a printed list to remember things I need to grab when heading to the hospital.

One thing I have wanted to do but haven't yet is measure their parent beds and cut some foam to that same size.  Then I could bring the foam and make the bed more comfortable for me.

What about you?

Do have a hospital bag ready for you?  For your child?  What do you pack?  What do you like to have with you at the hospital?  Share some tips and advice with us?  Are you inspired to create a hospital bag for yourself now?

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Handicap License Plate/Placard in Utah

So you have a child with disabilities and you are wondering how to get a Handicap License Plate/Placard in Utah.

If your child uses a wheelchair or cannot walk long distances, they qualify.  Here are the actual qualifications...

State law defines a “disabled” person as one who:

• cannot walk 200 feet without stopping to rest;
• cannot walk without the use of, or assistance from, a brace, cane, crutch, another person, prosthetic device, wheelchair or other devices;
• is restricted by lung disease to a specific standard;
• uses portable oxygen;
• has a cardiac condition to a specific standard; or
• is severely limited in his or her ability to walk, due to an arthritic, neurological, or orthopedic condition.

You have 2 options...you can get either
#1) 2 windshield placards,
or
#2) license plates for 1 vehicle plus 1 windshield placard.

The license plates cost $16 as a 1 time fee.  The placards are free.

You must renew the placards every 2 years (but not plates).  To renew your placard you just need to go in person to your local DMV office.  It is free and you do not need your Dr. to sign anything to renew them.  ( I didn't even have my disabled daughter with me when I recently renewed mine).

Here is the general website http://dmv.utah.gov/plates/disabled

You need to have your Dr. fill out this short form (TC 842) http://tax.utah.gov/forms/current/tc-842.pdf and take it in to your local DMV office.  You can also submit it by mail for an extra $4.

Utah Disabled Placards and Plates are honored in other states while traveling.

I have plates on our wheelchair van and keep the placard in her Wheelchair Go Bag.  That way if we travel or she goes in another vehicle in her carseat we have the placard with us.

Even if you have plates or a placard, if you do not have the person with disabilities with you, you should not use a handicap parking space.

What experiences/questions/advice do you have about handicap plates or placards?  Comment below to benefit other parents

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Carseats for older kids with Disabilities

Insurance and/or Medicaid will typically pay for a carseat once the child turns 3 (double check...but I think this was the last I heard) if they have a permanent disability.

You can get a carseat paid for even if they have a wheelchair they travel in.  We use ours as a backup when our wheelchair van is in the shop, so we can put her in another vehicle (in the carseat).

It is really easy to do.  This is not one that you usually DON'T have to fight for.  Here are the steps...

1.  Call your insurance or medicaid and see what Durable Medical Equipment suppliers (Usually a homecare company) they will cover.  I personally have always used IHC Homecare in SLC.

2.  While you are on the phone with insurance/medicaid you could ask what your covered benefits are regarding covering carseats.

3.  Call the recommended DME company and set up an evaluation appointment with the correct people.  For IHC it is called the "wheelchair shop" or "seating specialists".

4.  The DME will want a prescription (or letter) from your child's Dr., so while you are on the phone with DME ask them for their fax number.

5.   Call your Dr. and tell them you need a prescription (or letter) saying that your child needs a carseat and tell them to make sure and include the child's diagnosis.  Give them the DME fax number and ask them to fax it.  Ask them to call you once it has been faxed.  You can also ask them to mail you a paper copy.

6.  Once the Dr. faxes it in and calls you, call the DME supplier and make sure they received it.

7.  Attend the appointment at DME supplier.  They will measure your child, evaluate their tone (tight and loose muscles) and make a recommendation for a carseat.

8.  The DME will contact your insurance and get the carseat ordered.

9.  Wait for delivery of the carseat.

I believe you can get a new carseat from insurance/medicaid every 5 years.

She is 14 , about 4 feet tall and weighs about 65 lbs.
Yes...I know you shouldn't put things behind their head that didn't come with the carseat...judge all you want...it is the only way to keep her airway clear and her head upright...so we just have to do what we have to do!

We have only ever had Britax, so that is the only one I know about.  It is big and heavy which is a downside, but it also feels really substantial and safe.  They are side impact tested.  It slightly reclines, which is great if kids can't sit up.  I have been happy with the Britax.

Have you gotten a carseat from insurance?  What kind did you get?  What suggestions do you have for other parents?  Did you follow the instructions below?  How did it go?

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Swim Diapers for Older Children with Disabilities

Due to Crypto and other diseases that can be spread while swimming, pools have cracked down on wearing swim diapers for people who are incontinent.  (Although I have only ever had 1 person ask if Ellie was wearing a swim diaper...which is actually really inappropriate for them to ask, but that is another matter entirely)

We purchased this reusable swim diaper from Amazon about 5 years ago.  She has used it probably about 15-20 times in those 5 years.  It has held up beautifully.  It has a water resistant fabric on the outside and a soft fleece inner fabric.  It has strong velcro on both sides.  The velcro sides make it quite adjustable to the person's size.  I feel like I can get a good seal around the legs and the waist with the velcro.

Here are the reasons I like this particular swim diaper (although to be honest I have not tried others)

1.  Durable, has held up really well

2.  Comfortable, soft fleece lining

3.  Good fit with the velcro tabs, can get a good seal around legs and waist

4.  Not too bulky under swim suit

5.  Washable

6.  Velcro instead of pull-on, easier to get on and off

It looks like at the time of posting this blogpost (9/13/16) they are running around $56 on Amazon with shipping.  https://www.amazon.com/Discovery-Trekking-Containment-Medium-29x32-Inch/dp/B004GX5YTY/ref=sr_1_4?ie=UTF8&qid=1473788903&sr=8-4&keywords=discovery+trekking

Directly from the website they run $50-$60

http://www.sosecureproducts.com/

(This is a sister company of Discovery Trekking)

It is kind of pricey...but like I said, it has been extremely durable it hardly looks used...I would pay the price again.

There are sizing charts on both Amazon and the actual website.

Because it is so pricey I wanted to make sure I got the right size.  I called customer service and spoke with someone who walked me through every step of measuring Ellie to help me.  They were really kind and helpful.

Here you can see the swim diaper on Ellie

We also purchased a swim suit 1 size too big.  Then we cut the crotch seam.  

We folded over the fabric to make it stronger and used plastic snaps (so they wouldn't rust) on the crotch.  Swimsuit fabric does not fray, so it does not require any sewing.  Only scissors, the plastic snaps and a snap tool.  We purchased the swimsuit a size larger so that we could have a little extra fabric in the crotch to do this.  (as a note, it may require shortening the straps, but ours did not.)

Having the snaps on the crotch makes it easier to change back and forth from her 

regular brief to her swim brief and her change her brief if she needs a dry one.

 Here are the snaps done up over the swim diaper.

Then you just slip some shorts or a swim skirt over the top and wa-lah, you cannot see the swim diaper or the snaps.

OTHER OPTIONS

Disposable Swim Diapers
Search Amazon for "Disposable Adult Swim Diapers" and you will come up with some options.
I have not tried any of them.
Here are 2 options I found in a quick search on Amazon these or these
Some of the disposable brands I found were:
Swimmates
My Pool Pal

Cheaper Pull-on Reusable Swim Diapers
Search Amazon for Reusable Adult Swim Diapers
There are cheaper reusable swim briefs on Amazon such as this and this and this, that run about $27. I have not tried any others I really love the SOSecure (Discovery Trekking) one I reviewed above and would pay the extra.
These are some of the other reusable brands I found:
Swimsters
My Pool Pal
Swimmates
Kiefer

What about you?  What do you use as a swim diaper for your larger child?  What swimming tips and tricks do you have to share with other parents?  Please comment with any suggestions or questions.

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How to build up your supply of meds for an emergency

There are several ways to build up your supply of meds in case of an emergency.

Ask your Dr. to write your prescription for a higher dosage for the purpose of building up an emergency supply.

Ask you Dr. to write you a one time extra prescription (it may need to be a different dose than normal) to have some on hand for an emergency.

Fill your prescription "early".  Most pharmacies will allow you to fill your prescription at 24 or 28 days instead of 30.  If you always fill before you run out you will be able to create a small stock of extra meds.  If you wait until you run out, you will never get ahead.

Ask your insurance company if they will pay for 90 day prescriptions?  If yes, have your Dr. write for 90 day refills instead of 30.  One the 3rd month you won't have extra, but for month's 1 and 2 you would have an extra month or 2 supply on hand.

When you child is in the hospital they will be getting meds from the inpatient pharmacy.  You can still fill your meds as if you had been taking them at home.  For example.  Let's say you can refill meds at 24 days.  And lets say you are in the hospital for 5 days.  So, if you still fill your meds on the 24th you will now have 5 extra days.

So I recommend putting a reminder on your phone of when to reorder meds and not wait until the bottle gets low.  Order meds by the calendar, not by the usage.

Other than skipping doses (which I am NOT recommending), do you know of any other ways to build up a stock of meds for an emergency?  Please share with us.

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Tips for Parents to Survive While Their Child is in the Hospital

After 14 and a half years and who knows how many hospitalizations with Ellie I have found what works for me to make it through inpatient stays without going crazy (mostly) or murdering a resident (yet)!

You will need to find what works for you, don't feel like you have to do the things that I say.

#1) Breathe.  No seriously!  Focus on your breathing.  Slow your breathing.  Do relaxation exercises,  Deep breaths.  Cleansing Breaths (breathe out the bad energy/thoughts/stress).  And above all just remember to breathe.

#2)  Start a blog.  I only update my daughter's blog when she is having medical problems.  I tell people, when I am not posting, she is doing well.  So I basically only update it when she is in the hospital.  There are several reasons why this helps. REASON 1)  It keeps people from pestering you for information.  I get so sick of telling people the same things 5 million times.  Plus I can't remember who I've told what.  REASON 2) It is journaling out your feelings to help you work through your feelings REASON 3) It is creating a keepsake journal of your hard times that you can look back on.  I like to include lots of pictures.  You can even print off a blog into a book to keep as a keepsake.  Here is a link to Ellie's Medical Blog.  http://elliebellygirl.blogspot.com/

#3)  Find a hobby you can do while sitting in the hospital.  Over the years I have done cross-stitch, digital scrapbooking, hand quilting, and reading.  Something to keep your mind and hands busy.  (They have a library of books you can borrow on the 1st floor of PCH).  PCH Child life can bring a craft for you to do.

#4)  Get up every morning and get ready.  Shower, do your hair, do your makeup.  Get dressed.  Do your laundry (the hospital has facilities for you to use...ask me if you need info for PCH).  It will help you feel better and have more patience.  I look better while inpatient than I do at home...ha ha!!!

#5) Go on a walk or get some exercise every day.  The Jewish Community Center across from Primary Children's allows you to go workout and swim there for free.  Ask about it in the Ronald McDonald Room.  If you are uncomfortable leaving the hospital walk the halls or do some stairs.  You can also walk the bridges that go to Moran and U of U from the 4th floor without going outside.  That being said...I think ideally you should go for your walk outside.  Getting some exercise will help with your endorphins and mood.

#6) Which brings us to... get outside at least once a day.  Breathe some fresh air.  Look at nature. Hospital air is gross and germy...get outside!  I don't do this every day...but I should.  I feel so much better after doing it.

#7)  I try to eat healthy while inpatient.  My bowels are always bonkers in the hospital because of too much stress.  If I try to eat better it helps out the bathroom situation.  I really do feel better when I eat healthy.  (This does NOT always happen....but it is my goal)

#8) I do treat myself to a treat once a day (trust me...it used to be every meal and snacks in between).  I usually choose hospital tapioca...I LOVE THE STUFF!

#9) Focus on the small victories.  ie: increased feeds by 5 mL, opened eyes, smiled, lowered oxygen for 5 minutes, etc...Try not to think about the future.

#10)  Split responsibilities if you have a spouse or someone to help you.  The way we split is that I worry about everything in the hospital and he worries about everything out of the hospital.  So the kids homework, finding childcare, taking care of the house, etc...all falls on him.  We still communicate everything going on at home and in the hospital.  But there is a clear line of
responsibility.

#11)  Talk to your nurse and ask if there is an hour (or 2 if you want it...I usually ask for 2) that you can have privacy.  I put a sign on the door and say "Mom is taking a nap from 2 PM-4 PM, come in if it is an emergency, otherwise, please come back later".  This gives me time to decompress, take a nap, have some alone time without people bursting in every 5 minutes.  In ICU you usually can't get 2 hours straight...but any amount of time is helpful.

#12) Have a hospital bag packed for both you and your child at home at all times.  Them when duty calls, you are prepared with your hygiene, clothes, meds, money, hobbies.

Those are my suggestions.  I would love to hear what helps you.  Please post below.

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Enemas and poop

There are many different methods and medications to get your child to poop.  Pooping is a big deal to a parent of a child with disabilities.

Our current regimen consists of senna twice a day, magnesium citrate every other day and an Adult Saline Enema (Generic) daily (also known as a fleet enema).  We also do manual stimulation.

Unfortunately insurance will not cover enemas.

We have found the best pricing at Smiths and Walmart (even better than online).  They run about $1.44 for a 2 pack of generic.  So that comes out to a little more than 70 cents per enema.  We will usually buy them out of their whole stock.  But they usually only stock about 5 packages at a time.

We used to do suppositories.  Our Special Care Dr. taught us that when you place the suppository you need to push it to the side so it is touching the person (inside of them).  This helps the suppository to melt and so it's not just randomly floating around inside them in a sea of poop.  And if you are using a suppository for medicinal benefits (such as tylenol suppositories) it allows the medication to absorb into the body because it is actually touching the body.

Manual stimulation is where the caregiver helps to stimulate the rectum into opening.  I would only do this if you have tried many other methods of getting them to poop.  It is gross and awkward...but has been really helpful for my daughter.  The child is placed on chux.  The child is rolled onto their side facing away from you so you can see their bum.  The caregiver puts gloves on.  The caregiver puts lube (KY) on their pointer finger and puts the finger into their rectum.  The caregiver bends their finger so it is running against the inside wall of the child's rectum.  Circle the rectum with the finger several times until you feel the rectum relax.  The poop will now come out freely once they have relaxed.  (At least this is the way it works for us.)  We learned this method from our Special Care Dr. (Comprehensive Care).  It is also called digital stimulation.  We now do manual stimulation every other day in order to stay on top of the poop train.

Do you have any poop tips and tricks?  Where do you buy your enemas?

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