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The Ins and Outs of Receiving Home IV Therapy From Your Infusion Nurse

When your child is starting home infusion therapy, there can be a lot of unknowns surrounding your nurse’s visit, what needs to be done before or after, and what to expect while they’re administering the medication. To help clear up those questions, we sat down with Doreen Carson, pediatric home infusion nurse at Pediatric Home Service (and 2017 winner of Minneapolis St. Paul Magazine’s Outstanding Nurse Award), to talk about what a typical home infusion therapy visit from your nurse looks like.

before your infusion

  • Have your bag of supplies ready for the nurse to use for the infusion or store them in a convenient location.
  • A PHS nurse will contact you before your appointment to see if they need to bring any supplies. If you know you need supplies and have a visit scheduled, let the nurse know beforehand.
  • Some children receiving enzyme replacement therapy may need Tylenol or Benadryl beforehand as a preventative measure for reactions. Your nurse will likely have you give this medication prior to their arrival.
  • Your nurse will call the day of the scheduled visit to confirm that your child does not have an illness if they are receiving enzyme replacement therapy.
  • If your child has a port, they may have a numbing cream that needs to be put on 30-45 minutes before their infusion to help numb the skin around the port.
  • If the nurse will be starting an IV, it’s helpful to ensure your child is drinking more fluids. This helps the veins puff up more to make starting the line easier the day of the visit.

during your infusion

  • When a child first starts infusion therapy, there may be an extra focus on letting them know that something might hurt or be uncomfortable. They will start to learn the routine over time.
  • The length of time an infusion lasts can vary based on the therapy – some take just 5 to 10 minutes to administer, while some can last up to 8 or 9 hours.
  • Your nurse will always listen to the child’s heart and lungs and check for any skin issues as well as check their blood pressure, temperature, heart rate, and respiratory rate.
  • Infusions goes the smoothest when the parent is an advocate for what the nurse needs to do, encouraging the child and helping ease any concerns.
  • Some patients will require pre- or post-hydration to help avoid potential side effects of the infusion.
  • If your child receives a steroid before their infusion, the nurse will also administer that intravenously.
  • Nurses always want to ensure you are confident in the process and any follow-up. They will ask if you have any questions on medications, education, signs of infection etc. Be sure to ask any questions you have as well.
  • During longer infusions, nurses respect the child’s and family’s needs by letting them sleep, playing a game, or blending into the background to monitor while the family enjoys time together.

after your infusion

  • If your nurse draws labs during their visit, they will ask how you would like to be contacted with your child’s results. If there are questions the nurse doesn’t know, they will contact the doctor’s office to find the answers.
  • Following an enzyme replacement infusion, children can have a delayed allergic reaction as much as a few days after the infusion because the drug is still in their system – so keep an EpiPen near them at all times, and make sure you (or any adults with your child in the days following) know the signs of an allergic reaction.
  • Some who receive enzyme replacement therapy may be tired the next day.
  • Children receiving IVIG can frequently have headaches following the infusion, or be especially sleepy.


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Originally published: November 2, 2016