Frequently Asked Questions - Central Line Edition (Broviac)
Our amazing followers and readers are always asking me about Adeline's Central Line or BROVIAC®so I figured I would compile all the questions and put them in one place. If something is not covered here, please reach out to me because I would love to hear from you.
What is a Central Line?
AKA Central Vein Access Device (CVAD), Central Vein Line (CVL), Central Vein Catheter (CVC)
It's primarily used to infuse medication and fluids into a large vein without the discomfort of a needle being inserted into the vein. Again, the catheter can be used to give medications, fluids, blood products, and to take blood samples for testing.
What are the types of Central Lines?
A PICC: (peripherally inserted central catheter) line goes into your arm and runs all the way to a large vein near your heart. The other end may have one or two tubes, called lumens, that stick out of your arm just above your elbow. That’s where the medicine goes. This is used when you need medication, fluid, or nutrition longer than an IV but maybe less than 3-6 months.
Port: Also called an implanted port, this is a thin tube with one or two discs on one end. It goes entirely under your skin, discs and all. You usually get it in your chest, just under your collarbone. To give you treatment, your doctor places a needle through your skin and into the disc. To keep you from feeling pain, you can get a cream to rub on and numb the area where the needle goes in.To get a port, you need a short, minor surgery.
*Tunneled CVC: Under general anesthesia, the catheter is inserted by a surgeon under the skin of you/your child's chest wall and into a large vein that leads to the heart. rimarily used to infuse medication and fluids into a large vein without the discomfort of a needle being inserted into the vein. Again, the catheter can be used to give medications, fluids, blood products, and to take blood samples for testing.
What is a BROVIAC®?
Adeline has a BROVIAC® which is a specific brand name for a CVC. It's a catheter and is a long, hollow tube made of soft, rubber-like material called silicone, with an opening called a lumen. This catheter is commonly referred to as a central venous catheter because it is inserted into the large vein leading directly into the heart. Extremely similar to HICKMAN, but a BROVIAC® is smaller.
What is TPN (AKA HP or Parental Nutrition)?
In the most basic terms, HPN or Home Parental Nutrition provides nutrition [usually] through a central vein, for people who cannot eat or absorb enough food through by mouth or via a feeding tube to maintain a healthy nutritional status. It is often called TPN (Total Parental Nutrition) referring to nutrition that provides all calories intravenously. HPN is commonly mislabeled TPN and even I’m guilty of doing just that. The difference between TPN and HPN is that TPN is usually administered in a clinical setting and accounts for all of the patient’s nutrition while HPN is administered at home and accounts for some amount less than all. HPN is a sterile liquid chemical formula and can contain protein, carbohydrates, fat, minerals, electrolytes, and vitamins. It is delivered via a central line access device (CVAD) or an IV catheter (needle in the vein) directly into the bloodstream so it bypasses the normal digestion in the GI (gastrointestinal) tract. You can read more about how it impacts our life.
Why does she have a Broviac?
Because of injuries she had to her gut in her early life (NEC, colonic stricture, malrotation/volvulus), Addie has short bowel syndrome. This causes most of the issues she has with eating and growing, Even with the feeding tube and an elemental formula, she can’t tolerate enough calories to grow and she gets sick if we try to give her enough through the tube to support her growth. Aside from volume tolerance issues, she’s unable to absorb all the calories, nutrients, vitamins, and minerals she needs through her digestive system. Even when receiving more than enough calories via feeding tube, because of lack of absorption, she is malnourished and her cells are “starving”. The biggest reason she needs parental nutrition is to live, it’s literally and figuratively her life line.
Will she need this forever?
This is always so hard to answer. We really hope not and have faith that she will not. We have gone without it for 6 months, tried to wean her before, and now we have recently made some reductions and fingers crossed she continues to grow. The times she has gone without it before have not gone well for her. The hope is that her gut will heal, and begin to work better with time and treatment. Our team said it could take up to 7 years for her gut to heal from her malrotation and volvulus, so she needs more time.
How old was she when she got it?
Adeline has had parental support one way or another most of her life. When she was a preemie, she had a PICC line. She had her first broviac placed when she was 1 years old. She did have a period of nearly 6 months when she did not have any PN support.
What does Adeline know about it?
I love this question! We use official medical terms with Adeline, tell her about it constantly, talk through what we need to do to take care of it, explain how to keep it safe, and why she needs it. She understands it's her "bro-yak" and she has a Gus Gear to protect it. She sometimes really surprises us with her knowledge. Last time we were in PreOp an anesthesiologist said, "I am going to give your tube a drink." and Adeline replied with, "You flush my bro-yak with saline!" . I nearly died because she was dead on and used all the correct vocabulary. She knows she needs it to be healthy and grow.
How many hours a day is she on TPN?
She started on 24 hours a day, and was on 16 hours per day for nearly a year. Currently she receives her TPN 12 hours per day and gets it from 8pm to 8am.
When it's finally is no longer needed are there any other challenges Addie might have to face?
This can really differ for each individual child. For Adeline, she may have difficulty growing, maintaining her blood sugar, and staying hydrated. Right now if Adeline is sick, has a set back, cannot tolerate her feeds for whatever reason she has always had the TPN to make sure she is getting enough calories, fat, sugar, and hydration. That sort of safety net will be removed for her. Our team just told us that when kids go off of TPN, about 50% end up back on at some point in their life.
Does TPN long term cause damage to her other organs, liver?
TPN is used as a last resort, when all else has failed and nothing else is working. That is because it's not safe or ideal to be on for a long period of time. Catheter-related sepsis occurs in probably ≥ 50% of patients and this is incredibly dangerous. Patients may experience glucose abnormalities (hyperglycemia or hypoglycemia) or liver dysfunction occurs in > 90% of patients. Hepatic complications include liver dysfunction, painful hepatomegaly, and hyperammonemia. They can develop at any age but are most common among infants, particularly premature ones (whose liver is immature). Other complications include volume overload, metabolic bone disease, and issues with gallbladder.
Does she just use it for nutrition? Or for other things?
Adeline uses TPN for nutrition, hydration, vitamins and minerals, and has occasionally needed her line to receive fluids with dextrose when she has had issues maintaining her blood sugar. She has received medications through her line as well but that is infrequent.
I am so touched that so many of you asked me your questions regarding Adeline's lines and the way she gets her nutrition. It shows me that you care and it really brings me joy to spread awareness and understanding about AB's rare disease. If you have any other questions, advice, favorites, please comment below.
**Keep them coming! It is important to note that I am just a mama so do not use this blog article for medical advice and always consult with your medical team before making any changes.**