Infusing Love: A Mom's View

Many new moms with a newly diagnosed child receive advice from veteran moms who have already “been there, done that” with their children. In other cases, moms learn lessons along the way and wish that someone had imparted little tidbits of helpful hints.

A life hack has been defined as a “strategy or technique adopted in order to manage one’s time and daily activities in a more efficient way.” HFA’s Infusing Love mom bloggers compiled a list of their favorite “Hemo Hacks” and share them in hopes that their experiences help others have a bit of an easier time in this adventure called motherhood!

Infusion Time

  • Vein wake up? Use hand warmers like the ones you use in gloves during the winter.  They are small and great for travel.
  • Put together a tackle box or utility tote (the kind you may keep cleaning supplies in) with your infusion supplies.  Having your supplies in one location is necessary but keeping what you need handy for a few infusions (especially if you have a two story house) makes infusion time a little easier.
  • Use videos, Disney Channel, Nickelodeon… anything that works during infusions! Bribes are okay sometimes when infusing.  Let’s call them “special incentives”!
  • Keep a separate “infusion only” toy supply to bring out to entertain your child during infusions. That way they don’t get tired of the same toys and they look forward to playing with those toys during the infusion time only.
  • Don’t be afraid to act crazy to serve as a distraction. I’ve seen some great moves from my husband!
  • Bubbles are magical…but put a towel down on the floor (especially if it’s linoleum or wood) so one doesn’t slip and fall!
  • Wash out old syringes and repurpose them for bath play or art time. The more your child is exposed to medical supplies the less scared they will be.
  • The dollar store is a hemo mom’s best friend for infusion incentives for toddlers.  Yes, it’s manipulation, but just think of it as positive reinforcement.
  • Make your teen put a factor reminder in his/her phone, it makes them share in the responsibility of sticking to their prophy schedule.
  • Make logging an infusion the final step of an infusion – you start an infusion with washing your hands, make sure you end an infusion by logging it. Start that habit early!
  • If accessing the port is too traumatic right now for you or your child, leave them accessed for the week if your treatment team agrees.  Make sure you confirm with your HTC how to keep it protected through the week.
  • Plan ahead for holidays and weekends when your factor supplier may be closed, but don’t forget to check your ancillary supplies in addition to your factor supply. You might have factor, but you still need needles to infuse it.
  • Consider siblings! Have a game or an activity that could help to include siblings during infusion time.

Bleeding Basics

  • No throw rugs around the house. Bleeder toddlers and throw rugs are a bad combination.
  • Frozen bagels or popsicles for new teeth bleeding are great. The frozen food helps slow bleeding like ice but they’re more likely to keep the bagel in the mouth.
  • Ban bouncing balls with the handles that kids love to sit on and bounce around at day care. Major butt/scrotum bleeding can result.
  • “Let them bleed.” Told to me by a young man, who, when I asked how to protect a very mobile four or five year old. Not the most popular suggestion, but one I came to cherish once I understood how stubborn my son is.
  • A cold pack on the back of the neck during a bloody nose seems to help slow down the nosebleed!
  • Your kiddo will be covered in bruises – if the bruise isn’t protruding or bothering him, don’t sweat it.
  • Keep a tape measure handy to measure hematomas or the circumference of a muscle bleed in an arm or leg.
  • Use a Sharpie to draw a circle around hematomas to see if they are growing in size or shrinking.Double diaper to help avoid bumps and bruises on their rear ends when they are learning to crawl and walk.
  • Olive oil rubbed inside the nasal cavity can help keep the nostrils lubricated and less prone to bleeding.
  • Frozen vegetables work in a pinch if you need an icepack!
  • The old wives tale of sucking on black tea bags really does help slow mouth bleeds.
  • Invest in dark pillowcases and sheets, and don’t worry with spending a lot of money on pillows.
  • Don’t try to wash pillows in your washing machine – that will end up costing you a lot more in repairs when the pillow explodes than a new pillow after a bad mouth or nose bleed!

Off to the Hospital

  • Put a medic alert tag on your child’s diaper. Just don’t forget to move it during diaper changes! They will always check a baby’s diaper in an emergency.
  • Put a medic alert bracelet on baby’s ankle until his/her wrist is large enough. When kids start wearing them at a very young age they typically don’t fight them later on.
  • Don’t feel guilty about using technology to keep your child occupied when they are in the hospital or having a bleed.  Do whatever it takes to keep their minds busy.  Don’t worry about what othersthink. Don’t forget the chargers!
  • When going to the hospital take a few fun pillowcases to brighten up your child’s bed.  A fun night-light that shows the stars on the ceiling is also something that can bring a sense of coziness in an otherwise yucky situation.
  • Some hospitals have a pre-surgery tour. Find out if yours does before you have to go in for a port or other procedure.
  • If your child has to spend time in the hospital, ask if you can bring and use your factor from home. Huge savings on the hospital pharmacy bill if you are allowed to bring it in!

By Land, Air or Sea: Traveling with A Bleeding Disorder

  • Ask your factor supplier to ship factor to your destination. If traveling by air, carry-on (don’t check) enough medicine and supplies to get you through 48 hours, knowing that you’ll have what you need on the other end.
  • Tape a laminated information card to the inside of your windshield in your car or to your child’s car seat.
  • Ask for a travel letter from your HTC. Factor can go through airport x-rays and we’ve generally had no problems with security. However, icepacks have been a problem since they are usually gel-filled.
  • Always carry a go bag in your car that is filled with anything you would need to make an ER trip or even for those long visits at the doctor’s office. I fill mine with a first-aid bag, emergency ice packs, children’s Tylenol, coloring books, crayons, paper, pens, search and find books, non-perishables snacks, water, a stuffed animal from home, and of course a medical pamphlet that explains your child’s bleeding disorder.
  • If you are really worried about traveling, check the HTC directory ahead of time to see where the closest HTC will be. You can also ask your HTC to call the one nearest to where you are going.

Mom to Mom

  • Celebrate mini milestones like the first time your child takes care of his own nosebleed all on his own or the time he/she just touches his skin with a needle for the first time alone, even if they don’t poke! Empowerment!
  • Don’t let hemophilia (or any other medical condition) define you or dictate what you can achieve.
  • Humor truly is the best medicine. Laugh often.
  • Make time for yourself and for you and your partner/spouse. Yes, finding a babysitter you can trust is hard work, but you need to take a break once in awhile.
  • Never postpone a professional photo session because your kiddo has a huge hematoma on his/her forehead. That’s just who he/she is at that age and stage and you’ll look back on those photos lovingly as time goes by.
  • Use your local chapter to find events and ways in which to meet other bleeders in your area. There’s nothing more comforting than getting to spend time with people that make you feel like you’re not alone.
  • Take the parenting advice you like and toss out the rest – it doesn’t matter how others think you should raise your child – it matters what you feel comfortable with.
  • Buy stock in band-aids, and hair coloring.  You’re going to need them.
  • Follow your gut and don’t ever let another parent make you feel like you’re being overprotective or that they know more about your child than you do. YOU know your child better than ANYONE else!

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

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