Home monitoring programme from the Single Ventricle Service

This page describes the Home Monitoring Programme from the Single Ventricle Service, developed at Great Ormond Street Hospital (GOSH) to help monitor your baby between stage 1 and stage 2 of surgery, when they are seen as most fragile. 

Babies born with single ventricle hearts will never have a ’normal’ circulation. The surgeons are able to perform surgery to improve their circulation in several stages with the aim of enabling your baby to grow and have a good quality of life.

However, after the first stage, babies can very quickly become unwell. This may happen for several reasons such as: 

  • The shunt (the tube that directs more blood to the lungs) is blocking
  • The heart’s pumping chamber is working less efficiently
  • The reconstructed body artery is becoming narrow
  • Chest infection

If this happens, your baby needs to come into hospital for investigations and possibly an intervention to help relieve the problem. Your Cardiac Nurse Specialist (CNS) will need to know as soon as possible if your baby is becoming unwell. By monitoring your baby at home, you can pick up small changes quickly which may help us anticipate a problem early.

Home monitoring can also assist the cardiac team in planning the best time for your baby’s second operation.

What will I be monitoring?

We will ask you to check and record your baby’s:

  • blood oxygen saturation levels
  • weekly weight
  • feed volume each day from bottle and/or feeding tube

Training

We will give you a package of training before you leave GOSH which includes:

  • Saturation monitoring and troubleshooting
  • ‘Red flags’ (recognising signs of deterioration in your child)
  • Basic Life Support (BLS)
  • Nasogastric (NG) tube feeding

As part of the Home Monitoring Programme, your baby will receive:

  • Weekly weight checks, usually by the Health Visitor
  • Weekly saturation measurements by the Community nursing team
  • Daily oxygen saturations done at home by you
  • Weekly calls from a named Cardiac Nurse Specialist
  • ‘Open access’ to your local Accident and Emergency (A&E) department or children’s ward

Saturation monitoring

Your Cardiac Nurse Specialist will provide you with a saturations monitor to take home. This equipment will be on loan from the hospital and you will need to return it when your
baby no longer requires this level of monitoring. We will teach you how to use the equipment and provide you with a few saturation probes to take home. Your Community Nurses will supply you with more probes as needed. Always keep a spare one in the house.

We ask you to check your baby’s oxygen saturations once a day for about 20 minutes. We normally suggest doing this first thing in the morning when getting your baby up
and ready for the day.

By doing the saturations in the morning, if there are any concerns you have the rest of the day to seek the help or advice you might need.

What is oxygen saturation?

Oxygen is carried on the red blood cells attached to haemoglobin molecules. Oxygen saturation is a measure of how much oxygen the red blood cells are carrying as a percentage (%) of the maximum it could carry.

When should I be worried?

Your red flags should provide you with a guide to recognising signs of deterioration in your child.

1. The expected or optimum saturation for your baby is 75% to 88% unless you have been told otherwise. As long as your baby is feeding as usual and is waking for feeds and passing urine – an isolated low saturation reading is usually not a problem.

If, however, when you measure the saturation you find that it is lower than the optimum level for your baby, check it again in an hour.

If the saturation continues to be low, please call your CNS team or the Cardiology Ward at GOSH for advice. They will advise you what to do and may ask you to bring your baby in to hospital for assessment; this will be your local hospital initially.

A high oxygen saturation reading can also be a sign of problems. If your baby’s saturation stays above 86% on several occasions, we may ask you to bring your baby to GOSH for assessment.

2. It is important that your baby does not become dehydrated. You should let your CNS know if your baby:

  • Is not feeding well
  • Is passing less urine than normal
  • Starts to have any diarrhoea or vomiting

If diarrhoea or vomiting is severe, you may need to go to your local hospital. Again call your CNS or the Cardiology ward for advice. 

If you think your baby looks unwell or you are concerned then call 999

Red Flags

For carers and parents of shunt-dependent infants

  1. Saturations: between 75% and 88%
  2. Change in breathing patterns: fast, irregular, tracheal tug, nasal flare, head bobbing, noises, recessions.
  3. Change in colour: mottled, dusky, pale
  4. Dry nappies: more than 4 hours between wet nappies
  5. Diarrhoea: more than once in 24 hrs.
  6. Not feeding well:
  • More than one vomit in 24hrs
  • Tired and sweaty while feeding
  • Decreased feed volume (no more than 20 minutes on the bottle/breast)
  1. Temperature: fever? Operation site infected?
  2. Poor weight gain or weight loss?
  3. Change in behaviour: lethargic, irritable, restless.

If you trigger a Red Flag then call the CNS team for advice on ext 5774/the Cardiology
ward 7848. In an emergency, call 999 

Feeding

We will explain the appropriate volume of feeds for your baby before you leave hospital. As your baby grows and gains weight, the volume of feeds will be increased.

It is important your baby gets the required volume of feed to ensure they stay hydrated. If your baby has any episodes of vomiting or diarrhoea then call your CNS or the Cardiology ward for advice.

You may wish to record the feed volumes and number of nappies your baby has in a chart. If you would find this useful then let your CNS know and they will provide you with some blank charts to use.

Caring for the equipment

It is important that you care for the equipment borrowed from the hospital in the appropriate way. This will ensure that the information collected about your child is reliable and correct.

  • Store the equipment in a dry, smoke-free environment.
  • Keep the equipment clean and out of the reach of children
  • Clean the equipment with a soapy damp cloth. Take care not to expose the electrical components to water.
  • Ensure wires are kept tidy and electrical components are always covered.
  • Keep the equipment switched off when not in use.
  • Please call the hospital if you have any problems or concerns about the equipment loaned to you.
  • Please return the equipment on the date discussed. If this changes for any reason then please let us know.
Compiled by: 
The Cardiac Nurse Specialist team in collaboration with the Child and Family Information Group
Last review date: 
February 2017
Ref: 
2016F1508

Disclaimer

Please note this is a generic GOSH information sheet. If you have specific questions about how this relates to your child, please ask your doctor. Please note this information may not necessarily reflect treatment at other hospitals.