IV Tubing Protection etc
- Spiral tubing to help prevent central line breaks: 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.
- Central line wrap (Summer's Lifeguard) to protect lines and keep them away from g-tube and ostomy
- 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.
- Vent tubing: Some families on the tpnsupport yahoo group get this tubing, slit it open, place the lines inside, and then coban or tape the tubing shut.
- Feeding tube straps http://www.oley.org/lifeline/TubetalkMA04.html
- Keeping g-tubes in place http://www.oley.org/lifeline/jftube.html
- Velcro clips for securing lines - safer than using pins, less messy than tape - but these serve only to guide lines rather than secure them against tugging, as far as we can tell.. Company will apparently send free samples.
- 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.
- Gus Gear: "fun, functional covers for ostomy bags, feeding tubes and central lines, and more!"
- Button buddies: absorbent cloth pad that velcros around the g-tube button
- Feeding Essentials: Feeding essentials and medical supplies for special needs kids
- 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.
- Feather Baby has side-snap jackets and outfits that are convenient and soft; up to 24 months. It's handy to be able to thread the TPN line between the snaps for a subclavian-placed line.
- 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
- Adult and Children special needs clothing www.special-clothes.com New ownership begins in January 2009, orders to resume.
- CamelBaks. From the yahoo tpnsupport group: "We went on the hunt for a new bag and have found the perfect bag. We purchased a CamelBak for kids. They are used for runners to hold water on their backs. We took out the water bladder and voila the TPN bag fit perfectly. There is a little pocket on the front where the pump fits nicely. It is the perfect size (they come in different sizes)and sits high up on her back taking the pressure off the shoulders and lower back. It also has an extra strap that clips across the chest for more support. We fitted her for one at the sports shop but got it cheaper on Amazon. So for kids on TPN that prefer a back pack over a rolling bag the CamelBak works perfectly. Before this, we have NEVER had a back pack that was small enough, supportive enough, the right size, shape you know they give you adult bags for babies. The last back pack we used was from Wal-Mart and was a good size but as she is on nearly 4 liters of fluid it did not offer good support and the straps of the bag would cut into her shoulders. "
- 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 firstname.lastname@example.org. ~~
- Adapting a backpack Backback Photos
- 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.
Parents love the small, lightweight EnteraLite Infinity Enteral Feeding Pump. I don't think the competition comes anywhere close to this pump's portability.
- Colored oral dispensers - www.healthcarelogistics.com
- syringes to fit directly to G-tube - google "slip tip syringes"
- extentions for syringes to fit to G-tube "Catheter adapter" ADDTO,INC.
Overnight Diapers and Bed Products
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
- using vinyl diaper covers that are meant for cloth diapers to help contain explosions -- be sure to check them frequently though, because they control the poo and smell and aren't really breathable and can trap in heat.
- waterproof vinyl trainers. It's an all in one product that is plastic pants on the outside, with a thick cotton liner. Machine washable. I've been putting this over the Huggies overnight diapers and it's really helped in keeping the leaks down. They come in girls and boys colors and about $5.50 for a pack of 2. Not sure about the sizes. The Target I was at only had 2T-3T size.
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.
Some parents use condom caths for boys.
Some parents have a great deal of success with a Bed wetting alarm. Others are interested in Reusable mattress covers and other products from this company. May be available more cheaply at Allegro medical or JRS Medical.
Zip-up covers for mattresses and pillows are available (made for kids with allergies).
Note that insurance may cover diapers, pads, etc. for children over a certain age, as medically necessary.
See also Dealing with SBS odors.
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.