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Resources

 Financial Aid 
Center

Financial Aid

Make an appointment to speak with your center's financial aid department to see what financial aid programs are available. The center's social worker should be able to help families get to the appropriate financial aid individuals to help

Grants

Some centers will award "grants" instead of financial aid or in addition to financial aid
 

Payment Plans

Most children's hospitals do not penalize families for missed or late payments

Fundraising

Grassroots

Personal fundraising - may include things like bake sales, garage sales, or church fundraisers

Fundraising Orgs

Not For Profit

 a Not For Profit? 100% of each contribution made helps patients and families meet transplant-related expenses. Donations are tax deductible and donations do NOT count as income for the family/child. COTA is an example of a not for profit https://cota.org/

For profit

What is a For Profit? Money donated to a for profit is considered taxable income for the recipient and may have an impact on eligibility for services such as medicaid. 

Insurance

It could be a admin/code. Pharm: If something seems higher than it should or more than you can afford, call your team for alt

Basics

  1. PPO v. HSA

  2. Covering those costs

  3. COTA

 Medicare/Medicaid

State

1. List of links to state websites https://www.medicaid.gov/state-overviews/index.html

Tip

Speak with your center's financial aid department to help navigate your state's process/requirements

Medicare/Medicaid
Medicine

How to administer
Capsules

Give with a soft food like yogurt, applesauce.

Give with a consistent food like cookie (TJ's ABC cookies are perfect size) or PB filled pretzels

How to administer
Liquid

Tablet - Crush into a syringe
https://www.youtube.com/watch?v=fUjH5NBrtPc Blow in face
Babies: alternate giving little of med then bottle feed. Can also slip the syrine tip in side of mouth while bottle feeding.

Medicare/Medicaid
Blood Draw

Child

l count or not count before the needle is inserted can help reduce anxiety. You can request a nurse visit appointment to be scheduled with your pediarician or specialist to have labs drawn.

  1. Ipad

  2. "race"

  3. infants: sugar water

Parents

Stay calm, validate feelings, be kind to yourself.

  1. Any tips to make their doctor has requested blood work. Most children find comfort in knowing if any appointment will be an 'ouchie' appointment or non 'ouchie.'

Medicare/Medicaid
Medical Supplies

a. NG Tube

  1. Placing https://www.youtube.com/watch?v=IKnKYKRfYgA

  2. Movement with NG Tube

  • Pin tube behind neck/back for crawlers

3. Night feeds

  • Ice packs on food bag to allow longer night stretches picture?

b. G Tube

c. Adhesives

  1. Removing

  2. Placing

d. Flushing

e. Bile Bag

Medicare/Medicaid
Inpatient Stay/Admissions

Essentials

For Child

  1. Comfort Item(s)

  2. Babies: Knee high socks

  3. Sound Machine

For Caregivers

  1. Pillowcase Hand lotion, in winter time saline nasal spray and/or lubricating eye drops

  2. chapstick

  3. eye mask

  4. ear plugs

  5. white noise app / sound machine

Secondary essentials

For Child

  1. Ipad

  2. toys

 

For Caregivers

  1. comfort set of sheets/blankets

  2. pillow from home

Medicare/Medicaid
Symptoms

Cholangitis
What to look for:

  1. Lethargy/Fatigue

  2. Severe Itching

  3. Abdominal pain or distended belly

  4. Unexplained fever

  5. Weight loss

  6. Jaundice

GI tract bleeds/Varices
What to look for:

  1. Abdominal cramping

  2. Bright red vomit

  3. Dark brown or black vomit that looks like coffee grounds Diahrrea

  4. Fatigue

  5. Stools that are red, black, dark brown, or tar-like in consistency

Ascites d/t portal htn/enlarged spleen
What to look for:

  1. Swollen belly

  2. Prominent veins on stomach

Itching
What to look for:

  1.  face

  2. belly

  3. Sleeping disturbances

Medicare/Medicaid
Life

Feeding

Frequent vomiting or large spit-ups. Feeding NG- if your baby is allowed to eat by mouth continue providing oral feedings so that they don't lose their oral skills even if they aren't taking in a lot. Gravity v. controlled v. pump.

After

  • Throwing up

  • Pooping 

Clothes

  1. Tips for blow outs

  2. Clothes specific for central lines/ports/etsy

  3. Orange clothing/staining

  4. Nursing

Advocacy

  1. For your childTestimony/Tips/Stories Slides from Symposium (Jen)

  2. For yourselfTestimony/Tips/Stories Slides from Symposium (Melissa)

Health
Nutrition

 Common defincies in BA kids

  1. Food to supplement definicies

  2. Pre-transplant

  3. High Calorie Diet

  4. Formulas: Pregestimil, alimentum

  5. Vitamins

  6. Fat solluable vitamins

  7. Tips for giving

  1. transplant

  2. Do approaches differ by age?

  3. Transition-most programs partner with a local adult program

  4. post-transplant

  5. Do approaches differ by age?

  6. Transitions

  7. Feeding aversions

  8. Foods to avoid post-transplant

Health
Mental Health

Child

Impact look at universities  who teaches/trains those who handle childhood trauma.

Resources Child Life Specialist at the hospital or transplant center Book Suggestions.

  1. The Body Keeps the Score

  2. What Happened to You?

Sibling(s)

Impact 

Resources at the hospital or transplant center Resources Sibling Support Project https://siblingsupport.org/

  1. The Body Keeps the Score

  2. What Happened to You?

Caregive

Impact PTSD

Resources Some sort of general directions - loop in social workers or psychologists

Development

Identity

We available to them through early intervention programs, private therapies, and how to work with school systems to develop education / medical plans as necessary 

Therapies

  1. Types of therapies available

Occupational Therapy

In the community to live a full life. OT tends to focus on more fine motor tasksr tasks early intrntion

Private

Tips for finding a private service - talk with pediatrician, transplant hospital social worker, local department of health.

 

District Provided

Definiton
IEP v. 504

Physical Therapy

In the community to live a full life. . PT tends to focus on large muscle skills (sitting independently, walking, running, climbing stairs) but may focus on any areas of challenge identified by the family / teacher / therapist

Private

Tips for finding a private service - talk with pediatrician, transplant hospital social worker, local department of health.

 

District Provided

Feeding Therapy

Early Intervention

 Private

Tips for finding a private service - talk with pediatrician, transplant hospital social worker, local department of health. District Provided

Social/Play/Behaviorial Therapy

Atrauma, social / emotional development that is delayed due to frequent hospitalizat

Private

Tips for finding a private service - talk with pediatrician, transplant hospital social worker, local department of health. District Provided

Speech Therapy

Speech Therapy helps children understand languge (receptive) and use language (expressive). Early Intervention

 

Private

Tips for finding a private service - talk with pediatrician, transplant hospital social worker, local department of health.

 

District Provided

That may be impaired or delayed by hospitalizations. Help families identify what resources are available to them through early intervention programs, private therapies, and how to work with school systems to develop education / medical plans as necessary

Team

1. Meet The Team Breakdown roles of everyone you may interact with The roles of transplant surgeons, pediatric, pediatric GI, anesthesia, nurse, social worker, physical therapist, occupational therapist, phlebotomist, radiologist, home health care team, etc.

2. Care Team Communication with your team tips on being an essential part of the care team and working with the care team to successfully manage = working together is important for your team and YOU Carly feeding/caring with the nurses example

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