Use and Care of Ports and Catheters With DIPG

Your child may have medical devices, such as a central venous access device (e.g., Broviac® catheter, Hickman® catheter, PICC line, Port-a-Cath®, Infuse-a-Port®), a tracheostomy (a surgically created hole through the front of the neck and into the windpipe), or a ventriculoperitoneal shunt (used to treat brain swelling). Not every child with a DIPG has these types of medical devices, but this section will give you some information about the use and care of some of these devices. These are only guidelines; you should follow the directions your health care team gives you about how to care for any medical devices.

This section will also discuss complementary and alternative medicine (CAM). Please discuss any CAM therapies that you might be considering with your child’s doctor or nurse practitioner. Some CAM therapies interfere with chemotherapy and radiation therapy, so it is very important to let your health care team know about any supplemental medicines you are using with your child.

Central Venous Access Devices (Central Lines)

Central venous access devices are longer-term intravenous (IV) lines that can be very useful for administering chemotherapy, blood product transfusions, IV fluids, total parenteral nutrition (TPN), and drawing blood. These types of lines are placed in large veins and the tip of the catheter ends in a large vein, just above the heart. It is important to know that the catheter is NOT in the heart. There are several different types of central lines, and the decision about which type of line is best will depend upon your child’s age, how frequently venous access is needed, your child's activity level, and the ability of someone to care for the line at home. The vast majority of children with a DIPG do not need a central line, or if they do, it is usually for only a short period, such as needing daily IV access for approximately 6 weeks with anesthesia during radiation therapy for young children. Several different types of central lines are discussed below. Your doctor or nurse/nurse practitioner is a great resource in helping you decide if your child needs a central line, and if so, which type is best for your child. The tips provided in this section are only general recommendations. You should talk with your child’s nurse to find out the specific care your hospital recommends, who is responsible for providing the care, and who will teach you how to care for the line at home.

Peripherally Inserted Central Catheter (PICC Line)

  • Use: A PICC line is a more of a temporary line, which is often used for shorter-term IV needs, such as with radiation therapy or a few weeks of antibiotic therapy. It can be used to administer IV medications, blood transfusions, and IV fluids. A PICC line can also be used to draw blood.

  • How it is placed: A PICC line is usually inserted under sedation or anesthesia by an interventional radiologist or a surgeon. It is a small, flexible catheter that is usually inserted in the upper arm, with a couple of sutures (stitches) to hold it in place, and then covered with an adhesive bandage over the exit site. Part of the line will be external, coming out from the exit site. The PICC line is usually loosely wrapped with an elastic bandage to hold the line up out of the way until it is needed.

  • Flushing the catheter: A PICC line requires daily flushing of the catheter with a heparin flush solution, which keeps the blood inside the catheter from clotting. The heparin flush solution is injected inside the catheter and will not affect the ability of the blood in the rest of the body to clot.

  • Dressing changes: The adhesive dressing over the exit site usually needs to be changed once a week, or per your hospital's policy, or if the dressing becomes soiled. Some health care teams recommend changing the dressing less frequently, or only allowing a trained nurse to change the dressing, so be sure to check your hospital's policy.

  • Restrictions: It is recommended that children with PICC lines NOT swim or submerge themselves in water (including bathwater). In general, contact sports are discouraged. The PICC line is the easiest line to accidently pull out, so you will need to take care to protect the line and teach your child to protect it while playing or at school. If the PICC line is accidentally pulled out, hold gauze or another clean bandage over the exit site until it stops bleeding. Call your child’s doctor or nurse practitioner if the line comes out and save the line so the doctor or nurse practitioner can be sure all of the line was pulled out and none remains broken off inside the body. If it is broken off, the catheter may need to be retrieved through a surgical procedure.

  • Home care: Your child’s nurse will teach you how to care for the PICC line at home, including how to flush the catheter, how to change the dressing, and how to administer medications through the PICC line (if needed). The nurse will also arrange for the supplies that are needed to care for the PICC line to be delivered to your home, and it is usually possible to have a home care nurse come to your home for a few visits to help you care for the PICC line until you are more comfortable doing it on your own.

Broviac® or Hickman® Catheter

  • Use: A Broviac® or Hickman® catheter is a longer-term central venous access device. It can usually stay in from a few months to several years, as long as it still works. A Broviac® or Hickman® catheter can be used to administer IV medications, blood transfusions, and IV fluids, as well as to draw blood specimens.

  • How it is placed: This type of catheter is usually inserted under sedation or anesthesia by an interventional radiologist or a surgeon in an operating room. It is a small flexible catheter that is usually inserted in the upper chest with a couple of sutures (stitches) to initially hold it in place; then an adhesive bandage is placed over the exit site. Part of the catheter will be external, coming out from the exit site. This type of catheter is also called an external tunneled catheter, because the line has a cuff made out of a material called Dacron that helps your child's skin adhere to the catheter and hold it in place. The surgeon makes an incision in the upper chest and tunnels the catheter under the skin to the neck, where it is inserted into a large vein. Generally, the sutures are not removed unless they are irritating your child's skin or they fall out. Once the Dacron cuff is anchored, usually after about 1 to 2 weeks, it is difficult to accidentally pull it out. This type of catheter can have one tube or be split into two or three tubes (called lumens); each lumen requires daily care.

  • Flushing the catheter: The catheter requires daily flushing of each lumen of the catheter with a heparin flush solution, which keeps the blood inside the catheter from clotting. The heparin flush solution is injected inside the catheter and will not affect the ability of the blood in the rest of the body to clot.

  • Dressing changes: The adhesive dressing over the exit site needs to be changed, usually once a week, or as per your hospital's policy, or if the dressing becomes soiled. Some health care teams recommend changing the dressing less frequently, or only allowing a trained nurse to change the dressing, so be sure to check with your hospital's policy.

  • Restrictions: Recommendations differ about swimming with a Broviac® or Hickman® catheter. Check with your doctor or nurse/nurse practitioner to see if your hospital recommends swimming with these types of central catheters. Bathing is usually allowed, but the dressing needs to be changed if it becomes wet. In general, contact sports are discouraged. If the Broviac® or Hickman® catheter is accidentally pulled out, hold gauze or another clean bandage over the exit site until it stops bleeding. Call your child’s doctor or nurse practitioner if the line comes out and save the line so the doctor or nurse practitioner can be sure all of the line was pulled out and none remains broken off inside the body. If it is broken off, the catheter may need to be retrieved through a surgical procedure.

  • Home care: Your child’s nurse will teach you how to care for the Broviac® or Hickman® line at home, including how to flush the catheter, how to change the dressing, and how to administer medications through the catheter (if needed). The nurse will arrange for supplies that are needed to care for the Broviac® or Hickman® catheter to be delivered to your home, and it is usually possible to have a home care nurse come to your home for a few visits to help you care for the catheter until you are more comfortable doing it yourself.

PORT-A-CATH® or INFUSE-A-PORT®

  • Use: A PORT-A-CATH® or INFUSE-A-PORT® (commonly referred to as a port) is a longer-term central venous access device. It can usually stay in for months to several years, as long as it still works. A port can be used to administer IV medications, blood transfusions, and IV fluids, as well as to draw blood specimens.

  • How it is placed: A port is usually inserted under sedation or anesthesia by an interventional radiologist or a surgeon in the operating room. It is a small, flexible catheter with a port that is usually inserted in the upper chest under the skin. Initially, one or two steristrips (butterfly-type bandages) will be placed over the areas where the port is inserted in the chest and where the catheter is inserted into a large vein in the neck. This type of catheter is also called an internal tunneled catheter, because the line is totally inside the body. The surgeon makes an incision in the upper chest to put in the port and tunnels the catheter under the skin to the neck where it is inserted into a large vein. Generally, the steristrips are not removed and will fall off by themselves with normal bathing. The port does not require the same care at home as a PICC or Broviac®/Hickman® catheter.

  • Flushing the catheter: Because the port is totally under the skin, it requires a special kind of needle (a Huber needle) to reach the port for venous access. In some cases, parents can be taught how to access the port, but in general most of the port care will be done by a nurse. A port requires a heparin flush once a month, but a flush may be needed more often if your child receives medicines through the port. The port needle should be changed once a week, if it is accessed.
  • Dressing changes: No routine care is required for the port at home, unless the port is accessed. If the port is accessed, the dressing should be changed once a week with the changing of the port needle. Your nurse or home care nurse will generally take care of the port.

  • Restrictions: Unless the port is accessed, there are generally no restrictions on swimming or bathing, but contact sports are discouraged.

  • Home care: There is usually no care to provide at home, unless the port is accessed for medicines. If needed, home care nurses can come to your home to teach you how to care for the port.