My daughter recently had a central line placed and is on 24-hour TPN/Lipids. After 19 months of tons of GI problems and not feeling well because of them, she finally feels great and wants to just run and play all the time. She used to want to be held most of the day, so this new activity is a huge challenge with the TPN/Lipids (two pumps, two bags, large backpack, lots of tubing to get caught, etc.).
My question: Any ideas on how to help her move around like she wants to, without me being the one to follow every single step? I can't get anything done, let alone help my other two kids. We've tried a rolling backpack, but she gets so mad when it hits things, is too hard to pull, etc. We also tried a play stroller, but the lack of front swivel wheels made it too hard for her to maneuver. Thanks for any help!
Mariah
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Help with ideas for getting around with a TPN dependent 19 month old
- By mlhps
- Posted October 18, 2009 at 12:02 am · 8 replies
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- By happyone
- Posted October 18, 2009 at 6:34 am
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A couple of options I can think of are to ask your homecare company to split your TPN into two bags so that you are not lugging around a 24 hours supply at once. I also start the TPN at night, so by morning it's half empty. Also, is there any way they can combine it to one bag instead of two? Corum has the top half filled with lipids and bottom with TPN, Once we add the additives, we pull a bar and it combines.
Another option would be to get a lightweight pole that your child can push around rather than a backpack or rolling pack. At least for in the house might work.
Also, taking a small board and putting on swivel wheels is sometimes a good option. sort of like creating your own belly scooter.
Lots of luck. it's a pain being on 24 hours at that age. I can totally relate. My son is almost 12, but how I remember those days at that age!
- By karenlas
- Posted October 18, 2009 at 7:25 am
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I saw this tubing on line. We've never used it but intend to as soon as Trevor has his central line put in. I emailed a mom who has a two yr old on tpn and loves this tubing. It's curley so it doesn't drag, hope this helps.
http://www.vygonusa.com/lectrospiral-coiled-iv-ext-sets-pe.htm
Karen
www.caringbridge.org/visit/trevorlasure
- By Genia
- Posted October 19, 2009 at 8:29 am
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Calea also will provide divided bags so that you end up with a single bag. Splitting it into two doses means more line accesses and therefore more risk of infection but it may be worth the accessibility. We all have different medical issues but do you know how long they plan on keeping her on 24 hour feeds? Safer to cycle if its possible. Even if they could give her a few hours "off-line" a day it may help. Also, what pump are you using? Some are far more portable than others. We had to advocate for a pump that would work better for our son. I've seen young kids get by with a fanny pack and the curly tubing mentioned in a previous post. You just need to roll the top of the bag down every few hours to ensure that the fluid stays at the right end. We then tape the roll. Sounds a little odd but it can work.
It took us a long time to figure out that the system given to us at the hospital wasn't the only one and that we were allowed to get creative.
Good Luck,
Genia
- By mamasmith
- Posted October 19, 2009 at 9:53 am
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My daughter used a shopping cart. Just a kids "Step 2" shopping cart. I put her pumps in it and she took it with her everywhere she went. She ran and played like all the other kids. Over time, it just became a natural way of life for her. It was very easy in public because of handicap accessibility.
I hope this is helpful. Let me know if you have any questions.
- By vaw2511
- Posted October 20, 2009 at 2:07 pm
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Hi
We too started at 24hrs, but gradually stepped down to 12 hours overnight with the tpn/lipids. Perhaps you could talk to your doctor about getting some free time off of the tpn and this free time also allows the liver to rest according to our doctors? We started with a 3 hour liver rest period at Denver Childrens Hospital then gradually over weeks started adding a hour until we are where we are now. My daughter loves her free time off of the pump, and when she is on antibiotics like she is now, they don't "mix" with tpn so we can't run both at the same time. Therefore, the rest period is important for many reasons, not just free play time!
In fact my daughter wants a day (night) off every once in a while from being connected, so far our Drs. won't allow it, but she sure gets sick of being attached.
- By GibBrogan
- Posted October 21, 2009 at 9:13 am
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Our big concern with our daughter Ellie was controlling the tubes preventing tangles (and strangles!)
While she was still an infant I fashioned 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.
After a few rounds of product development we have come up with a strong design that works very well. 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 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.
They are fairly easy to sew. The Velcro that runs the length of the sleeve also helps keep the lines stiff, also 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 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.
Also attaching a piece of silk tape to the strong part of the CVL catheter and the g-tube extension and then safety pinning the CVL to the inside of the clothes is a must since it takes the strain off the line and guards against tugs.
If you would like see pictures of the line cover or the pinning, I would be happy to send them to you.
Gib
- By Woeful
- Posted October 26, 2009 at 3:55 pm
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vaw2511,
Apparently some infusion companies will let you take an occasional break from TPN, depending on your overall health. I just found that out with my new infusion company (ThriveRx). I was told I have to remain hydrated, so I'd have to have hydration via the PICC line for about 3 hours during the day, but then that night could go without TPN. A lovely thought! But I know it's based on your overall lab values/health status and it's not something you can do every week. More like taking an occasional 'holiday' from the TPN. Maybe that's something you could explore for your daughter with your infusion company?
- By vaw2511
- Posted October 26, 2009 at 4:15 pm
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Hi, we asked and they said NO - - she is too fragile and if we don't do tpn, then we must do other fluids over 8 hours! They are worried about sugars dropping and as she is alway border line anemic, they won't budge on a night's vacation
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