Living on Home Parenteral Nutrition

StoriesLiving on Home Parenteral Nutrition

Interview with the deaf father of a toddler patient:

We know that your son is on PN would you like to give us some background on your living condition or special circumstances?

Challenges have mainly been when our son got older and started to grab, tear and pull on tubing. It is also difficult to have a very specific time when PN infusion for our son need to be started and disconnect.

Would you give us a little background on the PN for your son:

He started treatment in November 2020, one month old after having intestinal failure due to being born with gastroschisis.

From the beginning he needs 20 hours every day, gradual reduction in both volume and time. At the end 16 hours PN, free 8 hours at 11.30-19.30. (He is now off PN).

When dealing with PN therapy, what has been particularly challenging for you or where have you encountered problems?

I’m deaf so, I did not hear the alarms of the pump about e.g. occlusion. It felt insecure.

How have you been able to solve these issues?

I got the feature with alarms to my mobile. This is possible via Micrelcare (remote monitoring system) – all alarms can be send as SMS (or e-mail).

When and where did you get to know about Micrel Pumps and Micrelcare Pumps?

I was told right when my son started treatment at Akademiska Sjukhuset in Uppsala.

How long are you / your son now using Micrel pump and how long are you using Micrelcare?

The pump since November 2020, SMS function since February 2021.

What was you first thought about Micrelcare?

Very good, easy to follow the alarms via the SMS function.

We assume you use the patient portal – was it easy to get (login) and is it easy to use?

Yes.

What do you benefit from by using Micrelcare?

Since I am deaf and do not hear when the pump alarms, the SMS function has been very helpful.

What is the biggest benefit for you / your son when using Micrelcare?

That has been his lifeline.

In principle are you satisfied with the infusion pump and the accessories (set, backpack…)? And why?

Yes, easy to adjust settings in the pumps. Great flexibility to have the rucksack.

If you can give a short quote or description about your personal experiences with the Pump and Micrelcare what would you say? Or what would you say to other patients when they ask you about Rythmic pump and Micrelcare?

Easy to use, no problems. The downside was that it was not possible to keep the PN Solution warm outside in wintertime.

Having a look to the pump, Micrelcare or accessories (set, carrying systems) what do you miss, or would you change?

Nothing to change.

How could you as a patient caregiver be better supported by the industry, doctors, nursing or the health care system in general?
To have more healthcare staff who knew how to handle the pumps.