Tips and Tricks From the Nurses We Love
We're not nurses or doctors - so we don't want to dispense medical advice. But, we have stumbled upon some really good sites and some even better information from the nurses that care for Cecily. We hope you find this section of the site helpful. If you have tips to share, please let us know. We want to build a repository of information.
If your child needs a g-tube, don't worry! I wish we could get back all the hours of lost sleep over this procedure. While I won't say it has answered all of our prayers, it has provided Cecily with a way to feed and gain weight. I still remember trying to convince the doctors that Cecily didn't need this procedure. I felt like I had failed as a Mommy. I couldn't even feed my child. I blamed myself for this and I desperately hoped that the baby scale would report a different number when I gently placed her down for a weigh-in. Now we're g-tube vets. Here's some helpful information we've received on how best to care for these magical little buttons.
Check out I Love a Tubie! on Facebook and the I Love a Tubie web site! They started a feeding tube awareness week and so much more! All the info you need on being a parent to a tubie using child!
PVC foam piping... a great G-tube protector!
If your child has a g or j-tube, and receives overnight feeds via a pump - it can be scary. Will they choke themselves with the tubing? How can you prevent it from wrapping around my child's neck? We've found by buying some soft foam PVC pipe covers and cutting them down the side that we can wrap the tube and prevent Cecily from getting caught in the tube. It is a lifesaver and has enabled us to sleep well while not watching her every second!
Everything you ever wanted to know about the g-tube, pre and post surgery. For anyone caring for a child with a g-tube you must follow this Pedaling Backwards blog. This helpful and inspiring blog provides humor, love, hope and much needed g-tube care and maintenance including how to unclog a g-tube.
There are even sites where you can purchase clothes to make it easier to dress your baby. Check out these fun online stores. Now your baby can be g-tube chic
Mealtime Notions LLC was created by a wonderful occupational therapist, Marsha Dunn Klein, MED, OTR/L to provide mealtime support for parents and professionals who feed infants and young children with special feeding challenges. I encourage you to check out her site and to learn yet another perspective on tube feedings! We attended one of her talks at Rady's and it was great! She speaks about the stages of growth and also homemade blended formula! It may not be for you but it is worth looking at to understand the options for you and your child. She has lots of wonderful tips, like:
- Everything is a Grasshopper
- Tube Fed Dolls
- Kiss and Hug Therapy
What's a "G-J" tube? A gastrostomy-jejunostomy tube - commonly referred to as a "G-J tube" - is a tube that is placed into a child's stomach and small intestine. The J-Tube is surgically implanted in the upper section of the small intestine called the jejunum which is just below the stomach. The tube will be located lower and more towards the center of the abdomen, when comparing it to the location of a G-Tube. The primary reason for use of the J-Tube is to bypass the stomach and to be fed directly into the intestinal tract. This tube is used to vent a child's stomach for air or drainage, and / or as an alternate way for feeding.
The tube stays in your child's stomach because there is a balloon or a plastic bumper at the end of the tube inside the stomach. There is a plastic disc around the tube outside of the child's body. This keeps the tube from sliding in and out of the opening. This plastic disc should not slide around on the tube. The tube should be able to move in and out of the child's stomach just slightly. The plastic disc should be snug against the skin, (the space between the bottom of the disc and the stomach should be about the depth of a dime) but it should not cause pressure. There are some great parent forums that share tricks and tips for "G-J" care!
Radiology Info Org
How many times has your child needed a diagnostic test but you didn't understand the details behind it? This site is very useful as it summarizes pretty much all of the Pediatric Diagnostic tests that are commonly done (in plain English!) In addition, it explains the indications, the procedure itself, as well as what results may mean. If you're like our family, but probably feel like it's tough to keep this stuff straight and it can often be confusing! Check out this site!....... this site helps. The information comes from RSNA and the ACR- the "gold standard" when it comes to radiology info and policy.
What's Respite Care? I wasn't even sure how to spell it when our doctor suggested it. But, after much coaxing we have finally decided it was time for outside help. Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home. Respite programs provide planned short-term and time-limited breaks for families and other unpaid care givers of children with a developmental delay and adults with an intellectual disability in order to support and maintain the primary care giving relationship. Ask your insurance if you qualify for this service! If you don't, it can be expensive. We've been told this can be funded through Medical - so at least ask about it! We waited an entire year to take advantage of this service. If only we had asked sooner!
Our doctor recommended Not to Worry Inc. This compnay offers a comforting solution for families in need of quality new baby/postpartum care and the support for infants and young children at home. Their services bring welcome relief, education and confidence to new parents and to those struggling to balance their adult commitments with the needs of their children. At one point we received our care through Maxim Home Care. They come to your house, let you interview the nurses to ensure they are the right fit for your child, and they check on the care you are receiving with compliance visits every 60 days! This agency has provided our family with the peace of mind that we really needed to be able to take care of our son - and ourselves! We didn't want to have to ask for help... but sometimes you just have to!
Belly Bands by Cecily's Closet
Comfy for Kids; Priceless for Parents
Cecily’s Closet offers free belly bands (fabric wraps with Velcro) to children with feeding tubes. The wraps are designed to protect the Mickey Button or PEG tube that is inserted into a child’s abdomen for the purpose of feeding. These simple, fabric wraps enable a child to safely proceed with physical therapy because they protect the site from rubbing. They offer parents peace of mind by preventing the child from grabbing the tube site and reduce the risk of the tube being dislodged. Comfy for kids; priceless for parents; and FREE to anyone in San Diego that asks. For families outside of San Diego, we encourage a nominal $15.00 donation to cover fabric and shipping costs.
If you are interested in trying one, please complete our online form and someone will follow-up with you! For families outside of San Diego, please make your in-kind donation here.
Looking for something fancier? For anyone considering the procedure! Check out Benik! They produce professional bands to protect your child's g-tube. http://www.benik.com/peds/wrap/g-tube