Your child requires parenteral nutrition (PN), a specialized form of liquid food given through intravenous (IV) infusion. The information on this page explains the breakdown of the mixture of nutrients in PN and how to provide your child PN at home.
Home parenteral nutrition
At home, the PN solution will be provided in one bag. It is referred to as ‘total nutrient added’ (TNA) solution or ‘3-in-1’ solution.
The solution has three main parts:
- lipid (fat) in the upper chamber
- dextrose (carbohydrate) in the lower chamber
- amino acid (protein), vitamins and minerals in the lower chamber
The solution is created specifically for your child. You will also have to add a vitamin mixture to the IV bag at the time of infusion.
The total volume of solution, the rate and the number of hours will be customized to your child’s needs. Their final schedule will be decided by their age, size and nutritional needs. PN is typically given over a 12- to 20-hour period, through the evening and night, allowing time off during the day. Consistency is important, so the infusion should be started and stopped at the same time each day.
You will be trained on how to give your child parenteral nutrition
Before going home from the hospital, you will meet a home PN nurse who will teach you how to administer the PN solution at home.
At SickKids, you will need to attend multiple teaching sessions over about two to three weeks to learn the required procedures. Teaching sessions can take one and a half to three hours. Two caregivers are required to attend the teaching sessions together. Having a child on home PN is a lot of responsibility, so having a second person to share the responsibilities with becomes important over time.
The goal of the teaching program is to help caregivers feel comfortable and fully prepared to manage their child’s PN at home.
Procedures and focus of the Home Parenteral Nutrition Education Program include:
- Central venous access device (CVAD) education
- Aseptic non-touch technique (ANTT) and aseptic procedures
- PN preparation and administration
- Complications and troubleshooting
Administering PN at home: Preparing for the procedure
Administering PN at home: Mixing the PN solution
Monitoring required if your child is on home PN
While your child is on home PN, you will need to monitor them for the following complications.
Signs of infection
It is important to monitor your child for signs of infection as children on home PN have an increased risk of blood infections (CLABSI). Signs of infection should be reported to your primary team. These signs and symptoms may include:
- fever for more than one hour over:
- 38°C by mouth
- 37.5°C under the arm
- 38.5°C rectally
- chills
- redness, swelling or discharge at the exit site of the CVAD
- general feeling of tiredness and lethargy
Aseptic (ANTT) and sterile techniques during central line care are the most important ways to prevent an infection. Not all fevers mean that there is an infection from the central line, but it is always suspected and needs to be investigated. IV antibiotics will be started when there is a suspicion of a blood infection and will continue until it is ruled out.
CVAD function
You will need to monitor how well the CVAD is functioning. Watch your child’s CVAD for the following problems:
- Blocked or sluggish CVAD: Over time, the CVAD may become hard to flush, which can affect how well the PN is being administered or cause the line to be become blocked. Contact the medical team if a CVAD is suddenly unable to flush and obvious obstruction is ruled out, such as a bent or twisted CVAD. Never try to forcibly flush the catheter if it is blocked.
- CVAD gets pulled out/broken: Unfortunately, despite caregivers’ best efforts, the catheter may get pulled out or broken accidentally. When this happens, it is considered a medical emergency. During the PN teaching program, caregivers are taught how to deal with these emergencies. For more information, please see the video, Emergency CVAD procedures.
- Blood back-up in the catheter: Sometimes blood can be seen backing up into the catheter or cap. This may happen if there is an increase in pressure in the chest veins from crying, laughing, exercising or leaving the clamp open for a prolonged period. It will also happen if there is an opening anywhere along the system, such as a loose connection. If the rate on the pump is left in KVO (“keep vein open”) for a long time, it may also allow blood to back up. If blood appears in the catheter, the catheter should be flushed and re-locked with locking solution.
Hydration
Children on PN require careful daily monitoring of how much fluid they are losing through urine, stool and vomiting, as well how much fluid they are taking in through PN and drinking. Dehydration happens when the body loses more fluids than it takes in. This may be from not getting enough fluid or from losing too much fluid through ostomies, vomiting, diarrhea, fever, increased urination or perspiration (sweating). Your child may sweat more on hot days.
Symptoms of dehydration include:
- thirst
- reduced urination
- dry mouth and lips
- grey sunken look around the eyes
- weakness
- dizziness
Infusion monitoring
Give PN as instructed and prescribed by your home PN team. If PN is given too fast or missed, it can cause the following side effects:
- Hyperglycemia (high blood sugar): Hyperglycemia means high levels of sugar in the blood. This may happen if the PN solution is infused faster than the body can use it. The symptoms of hyperglycemia may include:
- irritability
- nausea
- weakness
- fast breathing
- jittery movements
- headache
- thirst
- increase in amount of urine
- positive urine glucose
- Hypoglycemia (low blood sugar): Hypoglycemia refers to low levels of sugar in the blood. This may occur if the PN is abruptly stopped without slowing down the rate. Certain patients are not able to maintain their glucose levels for prolonged periods of time off TPN due to their inability to absorb nutrients in their gut. The symptoms of hypoglycemia may include:
- sweating
- headache
- nausea
- slurred speech
- blurred vision
- lethargy
- dizziness
- Lipid overload: This is when the body has a high amount of lipid in the bloodstream due to infusion running too fast. Lipid overload can cause serious problems, such as:
- prolonged bleeding time, which may show up as bruising and internal bleeding
- the lipid becoming toxic to living cells
- breathing problems, such as rapid breathing
- increased heart rate
- Pump malfunctions: Malfunctions can cause infusions to be delivered too fast or too slow. If this occurs, you should notify your primary team and request a new replacement pump.
Safe sleep and entanglement
When a child is infusing PN and is not in the caregiver’s view, there is a risk of the child becoming tangled in the PN tubing. To prevent entanglement, it is important to position the PN tubing away from your child’s head and neck, especially while they are sleeping. This can be done by having the PN tubing come out the foot of your child’s sleeper and placing the pump at the foot of the bed. Purchasing tubing cable organizers or covers can also be helpful. Connect with your medical team for other suggestions and tips.