When I found out that Wilhelmina was likely going to have her nephrostomy tube for a few months, my mind start to think about how to make it easier for her. At first she refused carry the bag around with her attached to her waist and would crumble down to the floor screaming and kicking if I tried. So after a few days when she started to want to walk again and we headed out for a walk around the hospital one evening, I placed her bag in my purse and adjusted it for her so it would not drag too much on the ground and she was so happy. I started to think about what I would do when we got home…
The first morning we were home, Willa and I got up bright and early and I headed into the sewing room to work on a solution. In an hour I had put together a small bag tailored exactly to her size. She loved it!
After a day or two of having the strap fall down and having to adjust it often I added an elastic waist strap that is affixed with snaps. I have to say that it now work out perfectly. The waist band keeps the bag at the right hight and keeps it from slipping or moving around and she can use the shoulder strap if she want to or can use just the waist strap…
(the waist strap is under her shirt here and besides the tube coming out from her shorts, you can’t see that she has the nephrostomy)
The urologist nurses and the urologist that we met with yesterday were very impressed with the setup also and because she will have it for longer than usual, it keeps things neat and tidy and there are less chances that her tube will snag on something and be pulled out, which is actually a very scary thought but a very real risk.
What a great idea! Do you know if they sell these anywhere? I bet this type of bag would be great for a host of medical devices…..you should think about making and selling them.
She looks like she’s hanging tough! : )
Fabulous solution! (You are sooooo creative!!) I’m so happy that you both are working through this phase together. It’s such a bonding experience when you have a disabled child (if only for a short time), and you create a solution that works for everyone, and relieves stress from the child and yourself!! Pat on the back to you Mamma! 🙂
@ Erin Erdman:
I had a look but no, I don’t think that they are sold anywhere and the Urology team had never seen something like it either. From what I was told, often parents use the elastic that comes with the actual bag but it draws a lot of attention and the long tube can be stepped on or pulled easily. Others put it in a backpack but then the bag is not at the right hight as it should be lower then the kidney and if the bag is on the back and lower as it should be the child will often sit on it…
I think that I might very well make a few more and put them up for sale.
Ingenious and creative solution, you know how to make the best out of every situation! Best wishes for Willa, you and the boys.
You are so geneous Melissa…and she look so well…i am happy for all your family
Take care
Jocelyne XX
I hope your clever solution keeps you from worrying about the tube coming out and it is great that it looks so cool too! How strange is it that the new becomes normal so quickly?
Melissa, Glad to see Willa is back in action, so to speak. What a lovely, ingenius fashion accessory! As always, necessity is the mother of invention, and you’ve got something stylish here, too!
Such a clever idea! I can imagine you will have a hard time talking her out of carrying it when she is well enough to not need the nephrostomy tubing.
Such a great solution, and she’s such a trooper!
I agree, you should totally sell these… what a beautiful solution. I’m sure it’ll help her get back to normal faster 🙂
What a great, creative idea….all those little things help her to get back in the swing of things…
so nice to see her home and smiling:))
Love the waist strap idea, i’ve had bilateral nepherostemy tubes and bags for 2.5 years now and made my own bag and was just bumping around to see who and what else there was out there. Your little girl looks to be quite a trooper. I see that this blog was from quite awhile ago, I hope your daughter is healed by now and that the rest of your family is healthy!! Take care. 🙂
Thank you… I loved having the option of both straps for her. It was a rough three months with the tubes especially at her age. She had surgery to correct her defect in Oct 2011 and is now a completely healthy and happy 3 year old. I’ll send healing vibes your way and hope that good health also finds you also.
Jenn – Would you mind sharing your design? I am looking for something I can make for my mom (just had her nephrostomy yesterday). I am not sure what I can make that would work with pants. It looks like this design will only work with shorts?
Love the creative inspiration, hopefully with some tips from you ladies I can make her something that will work.
No, this design would work. Actually with an adult it would even better then what we had to do.
Because my daughter was young (18 months at the time) we needed to tape the valve etc to her leg because at her age it would have been easy to snag or for her to even just pull it out. In these picture it was summer so with shorts and skirts it was easy to have the tube come out from the bottom but If she had pants on we just made a loose loop in the tube and brought the tube up and out.
With an adult it would have been even easier because the tube is most likely not taped onto the leg and comes directly from the site… so the tube can just be coiled into the bag easily without even going in the pants