Products
From ShortGut - Wiki
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IV Tubing Protection etc
- Spiral tubing to help prevent central line breaks: http://www.vygonusa.com/lectrospiral-coiled-iv-ext-sets-pe.htm This product is about $2-$3 per day, but is typically covered by insurance. It helps keep the tubing from dragging on the ground and it also expands, instead of breaking, if it's pulled on or caught on something.
- Handmade tubing protector:This is a Light cotton sleeve that you put around the IV lines so that they can't be chewed on by little teeth and it makes them much thicker and less flexible so when they do wrap around the child at night as they roll in their sleep, it's not quite as scary. The sleeve is one piece of cloth that you close around the line using Velcro. It can be made wide enough to cover IV lines and feed lines. You can't buy these but if you know some one with a sewing machine they will save you many worries day and night. The Velcro that runs the length of the sleeve also helps keep the lines stiff, decreasing occlusions. It has saved us so many headaches with Ellie and it seems to have worked well for other parents that have used them. The dimensions of our sleeve is 4.5 inches wide and 3 feet long. With Velcro running down the length on both sides so that it can be closed to make a tube. The important thing is to keep the material light so that when you are carrying the child it doesn't make the line too heavy and pull on the line. Pinning the CVL to the inside of the clothes is a must.
- Fisher-Price Soothing Motions Glider can apparently buckle kids in during sleep to reduce the risk of them getting tangled in their lines.
- TPN/feeding pump product for crawlers http://www.keenerkidz.com/Our_Products.html This product is very expensive. Around $1,000 I believe, but another option out there.
- Feeding tube straps http://www.oley.org/lifeline/TubetalkMA04.html
- Keeping g-tubes in place http://www.oley.org/lifeline/jftube.html
- See Securing lines for additional products.
Clothing That Makes Life easier
- One-piece outfits (sleepers and day clothes) with snaps are really convenient for limiting kids' access to their g-tubes and central lines, and for keeping their tubes manageable since you can route them out wherever you want. It gets harder to find these outfits for bigger kids, but here are some sources that include toddler sizes. For sleepers: Lands End, Pajamagram, and Curious George. For day clothes: Old Navy and Hanna Anderson. For a large variety of "coveralls" that could be used for day or night: Hatley Nature, with sizes up to 24 months.
- Koala Kids brand, sold as Babys R Us, has one piece outfits and overalls (with snaps in the crotch) up to 48 months. They tend to be reasonably priced as well.
- Baby legs They are leggings that can be worn with a onesie to make life with tubes much easier. The tubes come out the onesie leg hole and the leggings keep baby's legs nice and warm. Many short gut parents have found these to be a must.
- Tummy Tunnels This is a product is an iron on patch that allows you to adapt any clothing.
- Specialty Clothes http://www.bundiebaby.com/
- For Safe Water Fun http://www.mountainbaby.com/browse_cat.php/sub_raingear.html This Canadian company has "full body," waterproof and breathable rain suits for 12 month to 4 years. Note that the prices are in Canadian funds. Photo
- Funny t-shirts and onesies (e.g., "Broviac Baby" and "I can eat and sleep at the same time, can you?"). See also Omegaven t-shirts.
- Ostomy covers - featured on Oley http://yentlssecrets.com/Page_2.html
TPN Backpacks
- Toddler size backpack that I'm going to use to adapt to fit Austin's TPN so he can be more mobile: http://www.ebags.com/samsonite/sammies_smile_small_backpack_penguin/product_detail/index.cfm?modelid=81032 ~~*The pediatric rehab hospital where I work will customize equipment, including creating or adapting backpacks to fit kids once they become mobile. To pursue this, get a script from your physician for an Adaptive Technology Evalution, and it should be covered by insurance. Visit our website at http://www.amazingkids.org/ or you can email directly at psydr1973@comcast.net. ~~
- Adapting a backpack Backback Photos
- http://www.triacmed.com/prod01-cadd2.htm#TKP-100%20CHILDREN'S%20BACK-PACK
- http://www.zevex.com/enteral/accessories/ - the super mini size can be used for a toddler. Works with the Cadd TPN pump and other pumps.
Enteral Pump
Parents love the small, lightweight EnteraLite Infinity Enteral Feeding Pump. I don't think the competition comes anywhere close to this pump's portability.
Overnight Diapers
Parents on the short bowel syndrome yahoo group have reported good results with:
- Huggies Overnights (the most absorbent diaper on the market?)
- adult incontinence pads inserted in the diaper
- using one diaper on top of another smaller diaper
Still, parents report having to get up once during the night to do a change even with a good system.
Diaper doublers may not be very effective, just wicking the urine up and out.
Custom Cabbage Patch Kids
Would you like a Cabbage Patch Kid that is exactly like your son or daughter? I will customize a doll that has a central line, g-tube and/or ostomy. It's great for self-esteem, teaching your child about their body, teaching self-care and educating staff/friends/family. Either send me a doll that you've selected or I can purchase one for you. Just give me the details regarding your child's gender, ethnicity and hair color. Payment for purchasing the doll (at cost) and shipping is requested. Please email me at psydr1973@comcast.net if you are interested and would like more details.
See also Shadow Buddies for less-customized options.
Ostomy supplies and donation
- Ostomy Supply Donation: Friends of Ostomates Worldwide: http://www.fowusa.org/newsite/page.php?page=home a volunteer-run, non-profit organization providing ostomy supplies and educational materials to ostomates in need around the world.
