Short Gut Syndrome Parents' Support Group
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February 27, 2010
10:30 a.m.

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Central lines

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LIne breaking
By: Jessica Taylor          (1:48 PM 11/18/2009)
My son is getting so many Line infectons I don't know how to prevent them. HELP? And if any one has problems with the line breaking I use mefix tape around the tubeing and get a thick safety pin and pin it to a belt, put the belt around your childs waste. It has saved me many trips to the hospital, it is fantastic. My dr was telling me I needed to think of a way to prevent it it was happening to much, I told her what i thought of and she said she would tell others same with my home care nurses. I really hope I can help you all and that I can recieve help back.
Protecting the line
By: Emily H          (7:24 AM 11/19/2009)
We did something similar to protect the line. Only I used a product called "silk tape" that is available through home care. It's pretty sturdy and has been a great way to secure the line. We pin it to a onesie we've modified to snap down the side (so the line doesn't get too close to his diaper). I'd guess that getting line breaks under control would be a big help with line infections
Preventing infections
By: Emily H          (7:33 AM 11/19/2009)
Your biggest defense against line infections is good sterile technique. I'm sure you know the basics... Open the line as little as possible. When you do have to disconnect it, protect the tubing end with a sterile cap (I hoard these) and scrub the clave with an alcohol swab. Friction is your best friend, here! I count to at least 50 while I scrub. Then let the alcohol dry completely before you connect the ends. We've got a member named Michelle who has a very, VERY meticulous technique that I've asked her to write about for our January newsletter. If you're reading this, Michelle, we'd love a sneak preview.

Do what you can to keep the connection points clean... especially away from diapers and ostomies.

Finally, remember that with short gut, a lot of infections can actually come from the gut itself.. In many cases, you're missing the piece of anatomy that keeps bacteria in the colon (the ileocecal valve).. The natural balance of bacteria in the gut gets out of whack and the bacteria leaks through the weakened intestine into the bloodstream, where they quickly attach themselves to the line.

So use the best technique you can to keep the line sterile where you can, keep bacterial overgrowth under control... and then just roll with the punches. Even with the best techniques, you'll get some infections. And once they start, it's a cycle that's hard to stop.
Pregventing Line Breakage
By: Renee          (1:56 PM 11/29/2009)
Line breakage goes hand in hand with central lines and children. We've certainly had our share of them. (Aaron has had over 24 lines placed to date.) My best tip is to coil the central line a little at the site before placing the sterile dressing over it then run the line down an arm and attach MEFIX around the large thick part of the central line then tent the tape around the arm. Since we have been doing this, it doesn't get in the way when we pick him up out of the crib or something. It basically looks like a PICC line. We secure the MEFIX around that thick part because the first place the lines would break is right where the line narrows, it is also where the line weakens first. We rarely have a line break now. We have set a record, we have been without a line infection or a line break in almost a year! There was a time when it seemed like we were either replacing a line or fixing one about every 2 weeks, so don't feel too discouraged.
Re: Preventing Line Breakage
By: Emily H          (3:58 PM 11/29/2009)
Thanks for the reminder, Renee, of the fact that sometimes lines just break or just get infected. We all have to do the best that we can... but in the end, things happen! I thought I'd finally found the perfect way to secure a PICC line for my son.. and then, while he was in the hospital recovering from surgery, the little bugger bit a hole in it and had to have the hole thing replaced. We must be careful, but the sometimes, we also have to say that these are kids, after all, and you can't ask perfection from children.
BIG dressing, Little chest
By: Jessie Lynn          (6:26 PM 12/04/2009)
The thing that I hate the most about the central line is the adult sized dressings. We have Intermountain Home Health and they don't have pediatric sized central line dressings and he is a 12 pound baby. the dressing gets into the fold of his neck and his arm pit and it hurts him to change the dressing every week. Does anyone know how I might could order pediatric sized dressings?
Re: BIG dressing, Little chest
By: Emily H          (2:42 PM 12/08/2009)
Is Intermountain home health having you use the dressing from inside the dressing change kit? Or are they providing a separate smaller dressing? I know that for us they send a 6 cm x 7 cm tegaderm every week that is much smaller and much more comfortable. It has a mefix border and a little cut out that you can line up with the line. The product number is 1614.

We used these for all of Patrick's broviac lines. When he started having skin irritation at the site of his current PICC line, they started sending us a Smith & Nephew dressing called IV3000 that was similar to the smaller tegaderm. I don't know if it can be used with the broviac line or not but has helped with Patrick's eczema.

There are other things you can do to help with skin irritation, too. I don't know if you use the skin barrier that comes in your dressing change kit. The newer kits include a sterile Cavilon barrier swab. Older kits have a different brand. You can put this on the skin before to help protect from the adhesive. Avoid the insertion site and make sure it's completely dry first.

I've also seen nurses use alcohol wipes or swabsticks like an adhesive remover when they remove dressings. It dissolves the adhesive and cleans the skin so removing the dressings doesn't hurt as much.

You're probably dealing with a different location of Intermountain Homecare than I am, but in my experience, you can generally tell your pharmacy technician or pharmacist when you've having a problem like this and ask them if they have suggestions. Typically they'll make suggestions and send me a few different products to try. They have access to a broader range of supplies than PCMC does.

Hope this helps
Re: Re: BIG dressing, Little chest
By: Emily H          (2:48 PM 12/08/2009)
One quick note - IF you are using a dressing that comes packaged separately from your dressing change kit, make sure that you open the package into your sterile field BEFORE you put your sterile gloves on because the outside of the package is not sterile. When I use these other dressings, I open my dressing change kit then open the package for the dressing and let the dressing fall into the kit. I don't touch the package with sterile gloves on and I don't touch the dressing without them. If I forget, then my husband or whoever is assisting me with the change opens the package for me.
Thanks
By: Jessie Lynn          (7:05 AM 01/12/2010)
I was able to get the smaller sized dressing for David's broviac and it has helped tremendously! Thank you so much Emily!
Re: Thanks
By: Emily H          (11:04 AM 01/16/2010)
I'm so glad!! I've wondered about you every time we've changed Patrick's broviac dressing! (He went back to a broviac the day after I replied to your post).
There are hardly any line infections in Germany
By: Connie          (2:16 PM 04/03/2010)
Hello, my name is Connie and I come from Germany. My daughter (16 months old) has suffered from short bowel syndrom for 15 months now after having gotten a NEC due to prematurity. She's had a Broviac catheter for 15 months now, too. I am shocked about the line infections described by many parents in this forum. In Germany, I have actualy hardly heard of such infections. We never had the Broviac changed yet, there was never an infection yet and I am dis- and reconnecting her daily by myself at home. Maybe we have a different way of doing this and protecting the catheter over here.
I prepare the infusion in a sterile environment. Al syringes, injections, lines, caps and so on are being sprayed with desinfectant before getting started. When connecting/disconnecting, I use a sterile cloth to cover any skin under the end part of the broviac.I wear sterile gloves and a mask. I spray, I underline "spray" the open broviac with alcohol desinfectant, additionally I spray the end of the line, the connectors and the flushing injection. I was taught that rubbing with desinfectant is a severe risk to infection, while the spraying spreads into every little corner of the material used.
After dis-/reconnecting I wrap the connectin part fully in two sterile swabs, then we wrap about 20 centimeters of cohesive elastic fixation bandage around it. Thats all.
I must go to regular check-ups at the short bowel center every 6 weeks and I meet a lot of parents there. Nobody ever mentioned having had an infection yet.
We have a very good homecare service, too. That is Fresenius Kabi.
We could even take her on a two-week vacation to Jamaica in Dec 09. Fresenius provided us with everything we needed for this period of time.
Furthermore, we do not experience liver problems associated to TPN over here anymore due to SMOFLipid in the infusion.
My daughter's liver values are like those of healthy children.
Please feel free to e-mail me at ladyconnie@freenet.de if you want to compare the procedures in the US and in Germany or if you have any questions. We also never had a problem with diaper rashes before. We se a barrier cream that is mixed at the pharmacy. I would love to exchange ideas with parents in the US. Maybe we can learn from each other...different countries-different procedures.
Re: There are hardly any line infections in Germany
By: Emily H          (1:23 PM 04/12/2010)
Connie,

Thanks for sharing. Anything that can be learned to minimize infections would certainly make life with Short Gut easier, if not lifesaving. The more we know and can learn from each other, the better.

Good sterile technique, such as you've described here, is obviously a key. I think a lot can be done to protect against that.

A major contributor, though, for many children is the tendency to translocate bacteria from their gut. This means that, especially when the ileocecal valve is missing, the bacteria from the colon seep through the walls of the small intestine ending up in the bloodstream. This type of infection happens even when the very best of sterile technique is used in handling the line. Do your doctors in Germany use any methods to control bacterial overgrowth and translocation that you know of? I know that for my son we use a regimen of oral antibiotics and have recently started using ethanol locks.

Diaper rash is a problem that varies from child to child. Different portions of gut will yield very different stool. A good barrier cream is the best solution, though. With proper care, SBS-related diaper rash can be relatively well managed, though.

As for liver health, the Lipids used in Germany are famous here. However, they are also famously hard to obtain due to the restrictions of the exporting pharmacy. Some families are fortunate enough to have access to studies into Omega-3 based lipids like the ones you describe. Other doctors are studying low-lipid diets with considerable success. (My son's liver made a miraculous recovery when we changed hospitals and changed to this method).

Thanks for being willing to share. My son's been in 3 different hospitals in the U.S. and I've learned as I've traveled with him that every center has it's strengths and weaknesses. It is my hope that as we share in this forum, we'll be able to build upon those strengths and improve quality of care for these children wherever they live and are receiving treatment


Re: There are hardly any line infections in Germany
By: punam          (10:40 AM 10/03/2010)
Hi Connie

Can you share the name of the spray and also do you have a video of how you prepare the infusion as well as do the dressing change?
Re: Re: There are hardly any line infections in Germany
By: Jill Shadden          (7:14 PM 01/08/2011)
I was actually very shocked when I read this post. I have never heard of using a disinfectant spray. It sounds amazing though. My daughter made it her first 6 months with no line infections; then had a 5 months streak where we were in the hospital every two weeks with one. She has had about 15 lines, possibly more. I will have to ask her Dr's if they have heard about this.

Also Emily, I dont know what type of lipids your hospital uses but Tristyn was put in a study using OmegaVent Lipids which was amazing, she had no decrease in her liver function and only had to be on lipids maybe a total of 3 months.
Re: Re: Re: There are hardly any line infections in Germany
By: Greg          (12:39 AM 04/06/2014)
We also used Omegavin from Germany when my son's liver numbers started looking bad. It was a lifesaver. They said it would take about 1 month to see a difference and almost to the day his numbers jumped halfway back to where they needed to be and the following week went back almost to normal. I wish every child with SBS could have access to this miraculous lipid. Replacing the soy-based fats (which are notoriously hard on the liver) with the fish oil definitely put his liver back on the right track.
Reposting this here- regarding infection prevention.
By: artzyjen          (3:47 PM 08/02/2010)
Wanted to share something new we are trying. My son's gastroenterologist at the University of Nebraska Medical Center said they are going to conduct a study on this soon as they've had great success thus far.

My son has a single lumen Broviac, so what we've been doing in addition to ethanol locks is to alcohol down and wrap a tegaderm around the connections into the Broviac (i.e. tpn/antibiotics/etc.) For little ones still in diapers especially, it seems that bacteria may be seeping in through those connections and causing infections.

In one case, a child who had been having nearly constant line infections has now had a year and a half of zero infections- all since wrapping the line connections with a tegaderm!

And though we've only been doing this a little over a month, he's gone a full month with no problems with the line thus far. (He's on his fifth central line due to numerous infections and had been in the hospital every month this year for various problems, except for this last month.)
Re: Reposting this here- regarding infection prevention.
By: Jill Shadden          (7:16 PM 01/08/2011)
My daughter also gets treated at the Med Center, we have heard of many families this worked with. It is a very good suggestion.
Biopatch
By: punam          (4:19 PM 10/04/2010)
Does anyone use a biopatch with every dressing change? would be interested to know if it has helped reducing infections.
Re: Biopatch
By: seth          (8:56 PM 10/15/2010)
my daughter, who is now 3, is currently having the biopatch with every dressing change. we also use the ethanol locks 3 days a week. both of these were started about the same time. we had gone 19 months without an infection. in the middle of a nasty one now that resulted in the line being pulled and her sedated and intubated. personally, and i'm not a doctor, anything that can be done to prevent is helpful. still waiting on word as to the cause of this one as she has had numerous overgrowth issues.
Re: Re: Biopatch
By: Jill Shadden          (7:37 PM 01/08/2011)
We used the biopatch for a long time, it was very helpful but in the summertime my daughter has a bad reaction to it so we no longer use it. We are now to the point where she is off TPN and IV fluids, she still has a central line for another 2weeks. We do an ethanol lock for 12hrs then remove it for the other 12 hrs to prevent it from blocking the line. We used to do anti-biotic locks but the ethanol has seemed to work much better.
Also I dont know what type of overgrowth medicine yall use... we used to use gentimicin but it always made her sick so we recently alternate between flagyl and bacitracin every two weeks, which has prevented any line infections due to overgrowth.
Re: Re: Biopatch
By: jessica o          (9:17 PM 09/20/2011)
my daughter used a biopatch with every dressing change as well as the ethanol locks. be careful in case of the line breaking when using them if its left unfixed for too long the line can clot up an a new line will have to be put in. this happen to my daughter because of the hospital and i was so mad. also if the nursing agencies are doing the dressing changes, please please watch them. you would be so suprised of how many infections are caused by carelessness of the nurses. cleanliness is the key. also clorox wipes are great for the surfaces in which you are preparing the tpn.
Re: Biopatch
By: charlyn          (12:18 PM 02/02/2011)
My son Carsen has had a biopatch with every dressing change since he got the broviac catheter in March 2010. It's hard to say it reduces infections because there are multiple ways for it to become infected. I will say that the less it's used the less likely it will get infected. After his last line infection in Aug. 2010 his GI doctor took him off TPN and he's been infection free since. I still access it daily to flush it and he get's lab draw every 3 wks, but it's much less then when I had access it to give him anibiotics every 3 hours on top of his nightly TPN.

Re: Biopatch
By: Greg          (12:45 AM 04/06/2014)
We use the bio-patch on each dressing change as well as an ethanol lock. We are just getting over our first central line infection and my son has had his central line since November. 4 months and 1 infection. Not sure how that compares to the average. Ours was identified as e coli and said probably some stool was introduced to the lumens of his line.

how we were taught in Adelaide south Australia
By: barb          (7:13 AM 11/11/2010)
My daughter had six line infections resulting in sepsis episodes, acid locks in the line to try and clear the infections which ultimately never worked resulting in new lines. She always had broviacs. This was in 10 months all in hospital. When we took her home on Tpn we followed pretty much the same rule as Connie but without the spray disinfectant. We used Solu i.v antiseptic swabs and would drown the end of the broviac line and wait a minute for it to be completely dry. While it is wet bacteria can still be alive. Once connected we would use glad wrap i.e. plastic lunch wrap, and wrap it round and round the end and slightly up the line ensuring that the screw on connection of the brociac was securely wrapped..no air would get in. We did this after connection from her tpn lines also. Our biggest concern was her illeostomy which would popp unannounced and liquid acidic poo would go everywhere as well as on her line!!! Infection city!! It was a basic solution for a life and death situation and it worked a charm for us. We bought Shelley home with a brand new broviac inserted at 10 months and it stayed infection free until she was weaned off TPN at 22 months, after a few months of not needing this perfectly fine line we decided to let the doctors remove it as their is still the high risk of infection from gut translocation. Unfortunately it was a few months after that that Shelley was so dehydrated that her veins had collapsed and emergency surgery had to happen to insert another main line. Supposedly it was only for fluids so upon the advice of the surgeon we chose to have a port line. This was a line that is totally under your skin and when not needed does not require all the site changes and care that an exposed broviac needed. Sounded good but from the moment we saw this huge lump under the skin and a huge needle inserted through the skin into it that the fluids were being run into, I hated it. The accessing of it seemed cruel and the connection needle was held in place with lots of tape and arghhh... I hated it. I kept thinking of the positives of it for when she would be well again. Unfortunately she went down hill fast and soon TPN was started...again. Well this led us on a whole new story of lines and how one doctors opinion differs to another. Within a day of using this line with TPN it became blocked. Our gastro doctor believed it was because a port should never be used for TPN but other doctors didn't believe this to be true. They believed we were just unlucky! We soon lost that line after unblocking it successfully and shelley regaining her strength, it was soon blocked again about a month later and it was removed. Luckily we have not needed another one but if the day comes that we do, I will take the broviac without hesitation!!
Re: how we were taught in Adelaide south Australia
By: Jill Shadden          (7:42 PM 01/08/2011)
Hey Barb,
My daughter is treated in the Intestinal Rehab Program at the University of Nebraska medical center. They have one of the top programs in the world and are one of the best transplant teams in the world. Her Nurse Coordinator Brandy Gerhardt has told me on multiple occasions that if anyone needs advice for has any type of questions they can always contact her. The number to their clinic is 402-559-5000
No central line infections for over two years!
By: Renee          (2:59 PM 02/08/2011)
Primary Children's Medical Center Doctor's wanted me to put this in the message board. My 4 year old son has had over 29 central lines placed in the first two years of his life. We tried everything but it seemed sometimes we were in for a new line about every week to ten days and it was always a different strain of bacteria or fungus. We tried ethanol locks but that clotted his line so many times it was not worth it. My doctors tried a Vancomycin/Heperain mixture for a while but then we noticed it was becomming cloudy and was seperating during refrigeration. We discontinued using that but then we went to a plain Vancomycin flush. 3cc's just enough to sit inside the line. We use this Vanco flush everytime we access it just as we normally would a heparin flush (It does need to be refrigerated). We do not use heparin. The Vanco flush has worked wonders. No line infectuions for over two years. We are approaching three years on this last line and it is still flushing great. Recently we have had a little issue of being unable to draw blood from it but we just used a heperain flush one time and it cleared it up. My son just turned four years old and we are approaching 3 years with this particular line (broviac). I would whole heartedly recommend this treatment for anyone with this problem. It has worked great and continues to do so.
Re: No central line infections for over two years!
By: Greg          (12:47 AM 04/06/2014)
We only leave the ethanol lock in for 2 hours and follow with a saline flush and then a heparin lock for the remainder of the day. My son's TPN runs for 12 hours and this is performed at the end of each daily cycle.
By: Jill Shadden          (5:18 PM 02/08/2011)
We used vanco locks during my daughters tpn windows for 12hrs at a time and we loved them. it helped prevent infections as well. We too were on a streak where we had a line infection every two weeks for about 6months and once we started using that it seemed to help alot. We are currently line free and hoping that we stay that way! :)
Central line issues
By: Thomas          (6:34 PM 01/04/2014)
Hello everyone.

Our son has been on TPN since birth because he lost all his small bowel. We are currently having big issues because we have big skin growth around the cuff and it is growing out of his wounds. He now has skin growing out of the two places his two lines was inserted and it is getting worse. He is scratching him self to bloods every night and neither we or he get any sleep. He is very irritated with his site and is scratching a lot. The hospital don't know what to do and their only suggestion is to move the line to another site but that might not help at all. Any ideas, experience or suggestions?

His stool is also mad and about 10 a night how can this be managed better. We have tried drugs from the hospital but they have no or very little effect.
Any suggestions?

Thanks

Thomas
To prevent line infection
By: MayraH          (9:13 PM 07/19/2015)
Hello I have two twin boys that have a broviac one of them would always get line infection but our doctor put him on this thing called Ethanol so every time he's off his tpn we leave the ethanol in for six hours
Frustrated
By: Jeremy          (6:49 PM 11/05/2015)
My son has mytonic dystrophy, at six months old his intestines got caught on scar tissue from previous operations, causing his intestines to die and all but 12 inchs was removed. So then came the broviac, doctors and hospitals are now reporting to cps every time he has to go to the hospital. My question is has any other parents had to go through any thing like this? His line has broke 16 times since January and has two infections. The last time it broke he was admitted because no repair kits where available, and he sat two days before it got fixed, after the fix he was released then brought back the next day with a 104 temp. Believe we have tried everything but yet it still breaks and always in the same spot.the state of Arizona is know saying we are neglecting him and threating to remove him. What is normal for line breakedge? It's going to break its inevitable he's three and very active.

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