Patients and Caregivers
Resources for Patients and Caregivers
Living with intestinal failure or managing parenteral nutrition at home can involve a lot to learn. AIRI provides practical information to help patients and caregivers understand nutrition support, central-line safety, hydration, home infusion, and the transition from hospital to home.
These resources provide general education and do not replace your individualized care plan or instructions from your treating clinicians, infusion pharmacy, or home-health team.
Practical guides for care at home
Select a topic below to go directly to the information you need.
Understanding parenteral nutrition
Learn what parenteral nutrition and total parenteral nutrition (TPN) are, why they may be needed, and who may be involved in your care.
Read the guide ↓Home TPN infusion safety
Practical reminders for preparing for an infusion, using your supplies safely, and knowing when to contact your care team.
View the checklist ↓Central-line care & infection prevention
Everyday line-safety practices, warning signs, and guidance on when to seek help.
Read the guide ↓High-output ostomy & fistula
Learn what to track, signs of dehydration, and why fluid and electrolyte needs can change with high gastrointestinal output.
Read the guide ↓Hydration, electrolytes & lab monitoring
Understand why laboratory monitoring matters and what your care team may monitor over time.
Read the guide ↓Hospital-to-home checklist
A practical checklist to help patients and caregivers prepare for parenteral nutrition at home after hospitalization.
View the checklist ↓Caregiver guide
Practical information for caregivers helping with home parenteral nutrition, supplies, monitoring, and appointments.
Read the guide ↓Patient guide
Understanding parenteral nutrition
What is PN or TPN?
Parenteral nutrition (PN) is nutrition delivered directly into a vein. It is called total parenteral nutrition (TPN) when it provides most or all of a person's nutrition.
Parenteral nutrition can provide fluid, calories, protein, fats, electrolytes, vitamins, and trace elements when the digestive tract cannot absorb enough nutrition or cannot be used safely.
Why you might need it
You may need parenteral nutrition if you cannot maintain enough nutrition, hydration, or electrolyte balance by eating, drinking, tube feeding, or a combination of these.
Parenteral nutrition may be temporary or long-term. Your care team will reassess your needs regularly.
What is in the bag?
Every formula is individualized. Yours may include dextrose for carbohydrate calories, amino acids for protein, lipid emulsion for fat calories and essential fatty acids, electrolytes such as sodium, potassium, magnesium, calcium, and phosphate, plus vitamins, trace elements, and prescribed additives.
Your formula may change based on laboratory results, weight, hydration, gastrointestinal output, kidney function, liver tests, blood glucose, medications, and how much you are able to eat.
Who may be involved in your care?
Your care may involve a physician or advanced practice clinician, dietitian, pharmacist, home-infusion pharmacy, home-health nurse, surgeon, gastroenterologist, primary care clinician, and other specialists. AIRI helps coordinate communication among these teams.
Important: Do not change your parenteral nutrition rate, infusion time, additives, IV fluids, or medications unless your prescribing team tells you to.
Patient checklist
Home TPN infusion safety
Always use the instructions provided by your infusion pharmacy and nursing team. This checklist is a general reminder only.
Before you start
- Wash your hands thoroughly with soap and water.
- Prepare a clean, dry work area away from pets, food preparation, and clutter.
- Gather the PN bag, pump, tubing, supplies, disinfecting products, and flushes.
- Confirm the bag label has your name and matches your prescribed schedule.
- Check the expiration or beyond-use date and time.
- Inspect the bag for leaks, particles, cloudiness, discoloration, or separation.
- Confirm the bag was stored and warmed as your pharmacy instructed.
- Check that the pump is charged or plugged in.
During the infusion
- Keep the tubing secure and avoid pulling, kinking, or compressing it.
- Keep the pump with you and protect it from water.
- Follow your prescribed schedule for monitoring.
- Do not change pump settings unless you have been specifically instructed.
- Call your pharmacy or clinical team if the pump alarms, the infusion stops, the bag leaks, or you are unsure what to do.
After the infusion
- Follow your care team's instructions for disconnecting, flushing, and locking the line.
- Dispose of supplies as instructed.
- Record the infusion, symptoms, weight, blood glucose, and output if your care plan asks for it.
- Store remaining supplies in a clean, dry place.
Contact your care team if you cannot start or finish the infusion as prescribed, the pump alarms repeatedly, the tubing is damaged, or the bag looks abnormal.
Patient guide
Central-line care & infection prevention
Many patients receiving parenteral nutrition use a central venous catheter such as a PICC line, tunneled catheter, or implanted port. Central lines provide essential access for nutrition and medication, but they can develop infections, clots, breaks, or blockages. Careful line care helps reduce these risks.
Everyday line safety
- Keep the dressing clean, dry, and secure.
- Follow your nursing team's schedule for dressing and cap changes.
- Wash your hands before touching the catheter, tubing, caps, or supplies, and make sure anyone helping you does the same.
- Use the cleaning and disinfection process your infusion nurse taught you every time you access the line.
- Protect the catheter and tubing during bathing or showering as instructed.
- Never use scissors, pins, or sharp objects near the catheter.
- Avoid activities that could pull on, kink, or damage the line.
- Never use the line for an unapproved purpose.
Warning signs of infection or a line problem
Contact your clinical team promptly for:
- Fever or chills.
- Shaking chills or suddenly feeling unwell during an infusion.
- Redness, warmth, swelling, tenderness, drainage, or bleeding at the catheter site.
- New pain along the catheter path, shoulder, arm, neck, or chest.
- A loose dressing, broken cap, cracked tubing, leaking line, or a line that has moved.
- Inability to flush or infuse as usual.
When to seek emergency care
Call 911 or go to the nearest emergency department for severe trouble breathing, chest pain, fainting, uncontrolled bleeding, new confusion, or severe signs of illness.
If your line becomes disconnected, damaged, or pulled out, follow your emergency instructions and contact your infusion team immediately.
Patient guide
High-output ostomy or fistula
An ostomy or fistula can cause substantial fluid and electrolyte loss. Your care team decides what counts as high output for you based on your anatomy, clinical condition, kidney function, and hydration needs. The amount that is concerning differs from person to person.
What to track
- Ostomy or fistula output in milliliters.
- Stool consistency and any major change in appearance.
- Oral fluid intake.
- Urine amount, color, and frequency.
- Daily weight, if your care team asks you to monitor it.
- Symptoms such as thirst, dizziness, cramps, weakness, nausea, or fatigue.
Use a measuring container provided or recommended by your care team, and bring your log to appointments.
Signs of dehydration
Contact your clinical team promptly if you notice markedly reduced urine output, dark or very concentrated urine, new dizziness or fainting, rapid heartbeat, severe thirst or dry mouth, muscle cramps, unusual fatigue or confusion, a sudden increase in output, or that you cannot keep up with your prescribed fluid intake.
Water alone may not replace the electrolytes lost through high output. Ask your care team which fluids are right for you. Do not make major changes to fluid intake, medications, or electrolyte supplements without contacting your care team first.
Patient guide
Hydration, electrolytes & laboratory monitoring
Patients with intestinal failure, high gastrointestinal losses, parenteral nutrition use, kidney disease, or changing oral intake can develop fluid and electrolyte changes quickly. Laboratory testing helps your care team adjust nutrition, IV fluids, supplements, and medications safely.
Tests your care team may monitor
Depending on your care plan, monitoring may include:
- Sodium, potassium, chloride, bicarbonate, calcium, magnesium, and phosphorus.
- Kidney function.
- Blood glucose.
- Liver tests and bilirubin.
- Triglycerides.
- Blood counts.
- Selected vitamins, trace elements, and other nutritional markers.
How to prepare
- Complete laboratory draws on the schedule your team provides.
- Ask whether the timing of your blood draw should relate to your infusion cycle.
- Report a missed laboratory draw to your care team.
- Keep your team updated about new medications, vomiting, diarrhea, increased output, reduced intake, swelling, fever, or hospital visits.
Do not change your parenteral nutrition, IV fluids, electrolyte replacement, insulin, or medications based on a single laboratory result unless your clinician instructs you to.
Patient checklist
Hospital-to-home discharge checklist
If you are going home on parenteral nutrition, use this checklist alongside the instructions from your hospital, prescribing team, infusion pharmacy, and home-health team.
Before you leave the hospital
- You understand why parenteral nutrition is needed and what your infusion schedule is.
- Your home-infusion pharmacy has accepted the referral and confirmed delivery details.
- You know when your nutrition and supplies will arrive.
- You or your caregiver have completed infusion, pump, and line-care training.
- You have the pharmacy's daytime and after-hours phone numbers.
- You have the home-health agency contact information if home nursing is ordered.
- You have a current medication list and understand what to take, stop, or change.
- You understand your IV-fluid, oral-fluid, dietary, tube-feeding, and ostomy plan.
- You know when and where laboratory tests will be drawn.
- You have a follow-up appointment or plan for AIRI contact after discharge.
- You know the warning signs that require a call or emergency care.
Your first day at home
- Confirm that all ordered supplies are present.
- Store parenteral nutrition and supplies exactly as the pharmacy instructed.
- Keep important contact numbers somewhere visible.
- Use your written infusion schedule rather than relying on memory.
- Start tracking weight, urine output, ostomy or fistula output, glucose, symptoms, and intake if ordered.
Contact your care team if supplies do not arrive as expected, you cannot use the pump or access the line safely, you are unsure about your schedule, you do not know when your next laboratory draw or visit is, or your condition changes.
Caregiver guide
Supporting someone receiving parenteral nutrition at home
Caregivers are important partners in safe home parenteral nutrition therapy. Your responsibilities will vary based on the patient's needs, your training, and the care plan.
You should receive hands-on teaching from the infusion pharmacy or nursing team before independently assisting with parenteral nutrition or central-line care.
How caregivers can help
- Keep supplies organized in a clean, dry area.
- Know the nutrition schedule and phone numbers for the infusion pharmacy, home-health team, and AIRI.
- Encourage the patient to keep laboratory and clinic appointments.
- Help track symptoms, output, weight, fluids, and infusion concerns if asked.
- Watch for fever, chills, line-site changes, confusion, severe weakness, reduced urine output, or changes in breathing.
- Ask for help if you are uncomfortable with any step of line care or infusion setup.
Home parenteral nutrition can be demanding. It is appropriate to ask the care team for more teaching, written instructions, home nursing support, or help connecting with social work and community resources.
Know who to call
Different concerns may need help from different members of your care team.
Call AIRI or your prescribing team
- Changes in ostomy or fistula output, urine output, intake, weight, or symptoms outside your care plan.
- Persistent vomiting, diarrhea, poor intake, or dehydration symptoms.
- New swelling, rapid weight change, increased fatigue or weakness, or abnormal glucose readings.
- Questions about laboratory results, medications, nutrition, or follow-up plans.
Call your infusion pharmacy or home-health team
- Pump alarms, failed infusion, damaged or missing supplies, or delivery problems.
- Questions about nutrition storage, pump operation, tubing, flushing, or line-care supplies.
- Damaged catheter tubing, loose cap, leaking line, or trouble with infusion setup.
Call 911 or go to the emergency department
- Severe trouble breathing, chest pain, fainting, or severe allergic symptoms.
- Severe bleeding or a catheter pulled out with uncontrolled bleeding.
- New confusion, severe weakness, or inability to stay awake.
- Signs of severe infection or rapidly worsening illness.
Learn more about your condition and care
Last reviewed: September 2026 · Reviewed by Rajesh Kunadharaju, MD, FACP, FCCP — Medical Director, AIRI
This information is for general education and does not replace individualized medical advice, your prescribed treatment plan, or instructions from your treating clinicians, infusion pharmacy, or home-health team.
Need help with intestinal or nutrition care?
If you or someone you care for is living with intestinal failure, short bowel syndrome, or complex parenteral nutrition needs, contact AIRI to learn more about our programs or request a consultation.
AIRI is not an emergency service. For a medical emergency, call 911 or go to the nearest emergency department.