Patient Instructions for Ventricular Assist Device (VAD) at Home

Your child will be going home with a Ventricular Assist Device (VAD). To keep your child safe and healthy at home, it is important to follow these instructions.

Instructions for managing symptoms

Infection

• Fever can be a sign of infection. Call the VAD Team immediately if your child’s temperature is above 100.4°F.  

• Call the VAD Team if you notice any change in your child’s driveline site. Signs of infection include new redness, drainage, pain or tenderness with dressing changes or positioning. Send pictures of your child’s VAD site to the VAD Team through MyCHOP when you change the dressing.  

Bleeding

• Your child is at higher risk of bleeding because of medicines they are on to help prevent blood clots, called anticoagulants (such as warfarin/Coumadin®, aspirin, Lovenox®). The VAD can also change how the body makes blood clots.

• Call the VAD team if your child has a nosebleed that lasts longer than 1 hour. Children on a VAD are at a higher risk of nosebleeds, which can be severe. Your child should avoid picking their nose. Your team may recommend other ways to avoid nosebleeds, especially during the dry winter months. These may include nose sprays or using a humidifier in the home. 

• Children on anticoagulant medicine are at increased risk of bleeding in the brain if they hit their heads. Ask your VAD Team about what activities are safe for your child. Some activities may require a helmet.

• Call the VAD team if your child has bloody vomit or a bowel movement that is red or black. Bleeding in the stomach and intestine is also possible, but more common in adults.

Fluid balance

• Call the VAD Team if you notice any swelling of your child’s ankles, bloating, or shortness of breath.

• We do not require that you weigh your child at home. 

Stroke

Children with a VAD are at increased risk of stroke because of anticoagulant medicine. A stroke can be life threatening. 

• General signs and symptoms of stroke can include:

  • Changes in speech that include slurred speech, difficulty finding words, speaking but not making sense, and inability to speak.

  • Changes in movement that include falling, loss of balance, weakness on one side of the body, and facial asymmetry (face looks uneven) when smiling or crying.

  • Seizures, which can include jerking motions, unresponsiveness, and abnormal eye movements.

• Signs and symptoms of stroke in young children can include:

  • Headache, which may look like a child shaking their head back and forth while upset, continually crying, and not able to be calmed down.

  • Constant vomiting or throwing up especially after waking up.

  • Not able to move eyes to the sides (left or right), or always looking down.

• Signs and symptoms of stroke in older children can include:

  • Headaches, which your child may describe as a constant headache that wakes them from sleep, new headaches when they have not had them in the past, headaches that are different from their usual ones, or a headache that changes with laying down or sitting up.

  • Double vision or blurred vision.

  • Vomiting or throwing up.

If you think your child is having a stroke, call 911 and call the VAD phone. The ambulance should take your child to the local hospital. Your team will identify your local hospital before your child is discharged. 

Instructions for managing the VAD at home

Home Safety 

• Grounded electrical outlets are needed to supply power to your child’s VAD. You will need to test your outlets at home with a testing device. You only need to test and ground the outlets where you plan to plug in the battery charger and the VAD for overnight use. You can buy a tester device at a hardware store. Call an electrician if you have questions about your outlets or need to convert ungrounded outlets.

• Do not plug VAD equipment into an outlet controlled by a wall switch.

• If the power goes out at your home, connect your child to the battery and contact the VAD Team. They will help you come up with a plan to turn the power back on. 

• Generators are not necessary. If you have a generator, do not plug the AC (wall) adapter directly into the generator.  The battery charger can be plugged into a generator to charge the VAD batteries if the power goes out. 

• Area rugs should have rubber backings that stick well to the floor to prevent slips and falls.

• Stair rails should be secure, and walkways should be clutter free.

• If your child sleeps in a bunk bed, they should sleep on the lower bunk.

Water 

The VAD controller and batteries are not waterproof. Water or other liquid can damage the batteries. Always be careful when your child is around water. Be prepared for rain. Always have a raincoat, poncho, or an umbrella to cover your child.

Bathing

Your child cannot take tub baths. This puts the driveline site at risk for infection.

• For bathing, wipe with soap and a washcloth.

• Avoid getting the stomach wet to protect the dressing and driveline.

• Make sure the driveline dressing is always clean, dry and intact after bathing.

• Your child will be approved for showers by the VAD team once their site is well healed with a stable dressing plan. 

  • Follow the specific shower instructions provided by the VAD team.

  • Your child cannot shower without the use of the approved VAD shower bag. You will need to get a VAD shower bag from the VAD team. 

  • Make sure you have a rubber mat or other non-slip material on the shower floor.

Swimming

• Swimming is not allowed in any pool or body of water (lakes, rivers, ocean).

• Your child should not put their feet in the water due to risk of splashing or accidents.

• Be careful when your child is near water. Make sure that family and friends know that it is unsafe for them to go near or into the water.

Diet

• Follow your child’s specific dietary instructions.

• You will receive specific dietary instructions related to anticoagulation management in the Warfarin (Coumadin®) Important Facts and Log Book.

• It is important for your child to drink enough fluids to keep their VAD and kidneys working well. The VAD Team can tell you how much your child should drink each day.

• Your child should avoid being outside for long periods of time on very hot days to prevent dehydration.

Transportation 

• Always have your backup bag with batteries and back up controller with you.

• Keep emergency contact information, phone, and phone charger with you.

• Your child should always wear their seatbelt. For younger children, use the appropriate car seat or booster seat.

• Keep your child’s VAD bag on or around their shoulder when they are in the car so that it stays with them in the event of an accident.

• If your child is old enough, talk to the VAD team about sitting in the front seat and driving.

Travel

• Always notify your VAD team if you are planning to travel so they can help you prepare for emergencies while you are away.

• Bring the following items on trips:

  • AC adapter/mobile power unit (MPU)

  • Battery charger

  • Emergency bag with back up controller and batteries

  • Medicines

  • Dressing change supplies

Pets

Pets are part of the family and can provide joy and comfort to children. Going home with a VAD does not mean you cannot have pets. There are some safety measures to take around pets:

• Trips and falls that can result from excited pets being around your child. 

• Be careful of pets that may jump up on people. They could scrape or injure the driveline site. 

• Pets may be scared by the VAD alarms. Be ready for this and step in if needed. 

• Some pets have chewed VAD wires. It is possible that pets hear high sounds from the VAD that people do not hear. Pay attention to how your pet behaves around your child’s VAD.

Static electricity

Static electricity can interfere with the VAD controller and can cause it to stop working. It is important to avoid static electricity. Although you can’t always prevent static, there are things you can do to decrease the risk:

• Treat carpets in the house with anti-static spray or static guard

  • You can purchase anti-static spray, or you can make your own. To make your own, mix 1 part liquid fabric softener with 4 parts water. Spray your carpets every two weeks.

• Use fabric softener for all laundry. 

• Your child should avoid activities that create high static electricity, such as:

  • Vacuuming

  • Taking clothes out of the dryer and folding them

  • Rubbing their feet on the carpet

  • Rubbing a balloon on their head

  • Going down playground slides

• Your child should stay away from items that create a lot of static electricity, such as:

  • Older computers or television screens

  • Fleece pajamas or sweatshirts

  • Flannel or fleece sheets

If you are unsure whether an activity or item may cause too much static for your child, ask your VAD Team.

Medicines

• Your child’s medicines will be reviewed with you before discharge.  

• Your child should take their medicines at the scheduled time.  

• Check with your child’s healthcare provider before giving an “over the counter” medicine. These medicines may interfere with the action of their prescribed medicines.

• Your child should not take ibuprofen (Motrin®, Advil®), naproxen (Aleve®), or any medicines that are considered NSAIDS (non-steroidal anti-inflammatory drugs). These may increase the risk of bleeding since your child is already taking anticoagulation medicine. 

• Acetaminophen (Tylenol®) is ok to take for pain. Call the VAD team if pain is lasting longer than 48 hrs.

• Keep an updated copy of your child’s current medicines and bring it with you to each clinic visit.

Daily requirements 

• Record your child’s VAD parameters (RPMs, Flow (L/min), Watts, Alarms, and PI) on your home VAD flowsheet twice a day.  Bring your flowsheet with you to clinic or send the VAD Team a picture of your flowsheet through MyCHOP.

• Inspect your child’s equipment daily for kinks, bends, or frays in cables or wires.

• Keep VAD batteries charging when they are not in use.

• Look at the VAD dressing site and be sure it remains clean, dry, and intact.

• Wipe controller, clips and batteries with a dry cloth or alcohol wipes every 1-2 weeks.

Call the VAD Team if your child has any of the following:

• Less or darker urine

• Blood in their stool or continued diarrhea

• Changes in the driveline site

• Dizziness, weakness or seems more tired than usual

• Changes in mental status or muscle weakness

• Temperature of 100.4°F (38°C) or higher with signs or symptoms of an infection

• Nosebleed lasting longer than 1 hour

• Headache, especially if your child has never had one before, it is very painful, only on one side or part of the head, doesn’t get better with Tylenol®, or comes with other changes like vomiting, behavioral changes,  or change in mental status

• Shortness of breath

• New belly or ankle swelling

Call the VAD Team for any of the following issues:

• Consistent increases in the power or decreases in flow on the device

• VAD alarming, not related to batteries

• Yellow wrench lit up 

• Battery issues or changes in battery life that may require new batteries

• Other VAD related needs (new bag, equipment, dressing supplies, etc.)

Vascular Access Device Team Contact Info

• VAD Program:  267-426-2882, for appointments, refills, non-urgent questions

• VAD Phone: 267-844-3653, for immediate or emergency concerns, VAD alarms, and any issues on nights and weekends

Reviewed 6/21/24 by Catherine Montgomery, BSN, RN, CPN