California Heart Connection
A support and information network for those with congenital heart defects
Listed below are products and services that you may find helpful.
Medic Alert bracelets are available on www.medicalert.org or call 888-633-4298. If there is an emergency, medical personnel can call the phone number on the bracelet and MedicAlert will give all pertinent medical history such as surgeries, current medications, and his or her normal oxygen saturation level for your child, etc.
Care Notebook - The Care Notebook and Care Organizer help families keep track of important information about their child's health and care. The notebook contains forms for emergencies, appointments, medications, immunizations, growth tracking charts, as well as journals for tracking progress on daily living skills and much more. This wonderful tool makes it easier for families to find and share key information with their child's care team. The information can be printed from their website, or you can order a printed Care Notebook by calling (206) 987-5310.
"Vials of Life" are free from WalMart pharmacies or from the website at www.vialoflife.com. They are containers in which you keep a list of any medications that you or any family members are on. They come with a sticker that goes on your car or home window to alert medical personnel that there is medical information inside.
Sound and Motion Monitors can be used in a baby's crib to alert you if the baby stops breathing. A sensor is put under the crib mattress, and an alarm will sound if no motion is detected. They can be purchased at stores such as Babies R Us. Some doctors do not recommend the use of these products due to the possibility of false alarms. However, some parents find the benefits of being able to sleep more comfortably far outweighs the chance of an occasional false alarm. Putting a flat board under the sensor can also help reduce the chance of false alarms.
Tender Grips are specially designed adhesive strips (like band-aids) that hold on the ng tube without irritating the face. Your pediatric cardiologist can order them, or you may be able to get them from the respiratory department of the hospital
EMLA cream can help numb the skin before blood draws. Ask your doctor for more information.
Wetsuits for children: Warm Belly Wetsuits (www.warmbelly.com) sells wetsuits for babies and children to help keep them warm while swimming. Warm Belly will waive the shipping fee if you tell them you have a child with special needs. Right Start (www.rightstart.com) sometimes carries wetsuits as a seasonal item.
Free syringe samples and blue caps: Contact Baxa Corp at www.baxa.com or 1-800-567-BAXA for syringes or blue bottle caps (called Adapta-Cap Bottle Adapters) for easy filling of syringes. You can also ask your pharmacist for these items.
Floppy Seat - A comfortable shopping cart seat cover for your baby or toddler. It comes with it's own seat belt and covers the entire shopping cart to help protect against germs. Go to www.floppyseat.com for more information.
Wallet Card on Bacterial Endocarditis - B.E. is a serious infection of the heart that can develop with large cuts, dental work, or other medical treatments. Contact your pediatric cardiologist to find out if antibiotics are recommended for your child in any of these situations and to obtain a wallet card. See the American Heart Association's website for more information at www.americanheart.org.
