Home Monitoring Programme Patient Diary Evelina London Children s Hospital Westminster Bridge Road London SE1 7EH Main switchboard: 020 7188 7188 Home Monitoring Programme Patient Diary
Home Monitoring Programme Patient diary Patient name: Diagnosis: Home Monitoring Programme contact number: 020 7188 2555 In emergency please ring 999 Please bring this folder with you to all clinic appointments and hospital admissions
What is the Home Monitoring Programme? The Home Monitoring Programme has been developed to help watch your baby closely between stages 1 and 2 of surgery, as your baby will be the most fragile during this period. With your support and by following the steps outlined in this diary, we can work together to assess whether your child is well enough to be at home. The programme aims to enable you, as parents/carers, to monitor your child s weight, oxygen saturation levels and fluid intake at home. This will help you detect any potential change in their condition. At each clinic appointment, the nursing and medical staff will use the information recorded in this diary to assess your child. A specialist nurse will also phone you regularly to check how your child is doing and gather the information you have collected. We can then put this data into your child s electronic notes. Please monitor your child s fluid intake, weight, oxygen saturation levels and heart rate every day, and record them in this diary. You must continue to take the recordings even if your child is admitted to hospital. 2
About your baby This section is to be completed by a healthcare professional looking after your baby Name: Hospital number: D.O.B: Diagnosis: Operation: Date of operation: Cardiologist: Surgeon: Date of leaving Evelina London: Birth weight: Weight when leaving Evelina London: Oxygen saturation when leaving Evelina London: Target range for oxygen saturation: Heart rate and range: Feeding plan when leaving Evelina London: Medicines when leaving Evelina London: Name of medicine Dosage When given 3
Please measure and record: daily weight on chart the difference in weight from day to day daily oxygen saturation levels daily heart rate daily fluid intake. Home Monitoring Programme diary Please call us on 020 7188 2555 if you are at all concerned, or if: your baby does not gain 20 grams over three days your baby loses 30 grams or more over two days your baby is feeding less than normal, or less than 100mls/kg/day your baby s oxygen saturation levels are not consistently between 75-90% your baby does not have as many wet nappies as usual your baby has vomiting and diarrhoea. Please call 999 if: oxygen saturation levels consistently fall below 75% your baby experiences any breathing difficulties, such as grunting, noisy breathing or nasal flaring, or their ribs are more visible with breathing your baby is floppy and unresponsive you notice prolonged changes to your baby s skin colour, for example more blue/grey than usual, or if your baby s skin is cool to touch. 4
Example of weekly diary Feeds in millilitres (mls) Total Weight difference in grams (gm) Weight in kilograms (kg) Date SaO2 Heart rate 82% 146 3.420 + 10gm 80 85 90 100 95 100 550 mls 01/01/2014 Wednesday 1.1.14 80% 152 3.440 + 20gm 75 90 85 95 100 75 520 mls 78% 144 3.440 0 65 85 100 75 75 50 60 510 mls 81% 140 3.460 + 20gm 100 100 110 90 110 510 mls 82% 134 3.450-10 gm Thursday 2.1.14 Friday 3.1.14 Saturday 4.1.14 Sunday 5.1.14 Monday 6.1.14 5 Tuesday 7.1.14 Parents checklist please contact us on 020 7188 2555 if you answer Yes to any of the following questions: Are my baby s resting oxygen saturation levels below 75% or above 90%? Yes/No Is my baby s weight gain 20 grams or less in three days? Yes/No Has my baby lost 30 grams or more in two days? Yes/No Has my baby fed less than 100mls/kg/day? (please state amount) Yes/No Are there any changes to my baby s normal breathing pattern? Yes/No
How to weigh your baby Weigh your baby each morning around the same time, just before a feed, and before any medicines. Ensure the scales are set to 0.00 kg. Remove your baby s clothing and nappy. Note down the weight in the home monitoring diary. How to calculate weight differences from day to day You may find it helpful to use a calculator to work this out. 1 kg (kilogram) = 1000 gm (grams) Examples: 2.75kg = 2750gm Weight on day 2 = 2.970kg 2970gm Weight on day 1 = 2.950kg 2950gm Weight difference: 2.970-2.950 = 0.020 or 20 gram increase Weight on day 2 = 3.130kg 3130gm Weight on day 1 = 3.150kg 3150gm Weight difference: 3.130-3.150 = - 0.020 or 20 gram loss 6
How to use oxygen saturation monitor Place the oxygen saturation monitor on a flat surface so it does not fall. Ensure the monitor is plugged in, then switch on. Place the probe on your baby s finger, toe or foot at a time when they are calm. Use the same part of the body each time, as this is more reliable. Wait a few moments for the monitor to pick up the pulse signal. Only read the results when a good trace is showing. If the trace is not good, the result may not be correct. The oxygen saturation level (SaO2) reading should appear on the front screen along with the heart rate reading. If your baby is crying or unsettled, the SaO2 is likely to read lower than their normal. Therefore wait until your baby is calm and try again. Leave the monitor attached for about 20 minutes as it may take this long to pick up the correct reading. When you are satisfied that the SaO2 reading is as accurate as possible, record the number in the Home Monitoring Programme diary. Contact us if you have any questions or concerns. Switch off the monitor. Please note that the finger probe is for spot check of SaO2 only. Do NOT leave it on for longer periods of time, as this could result in tissue damage from the pressure of the probe. This equipment is not intended for use in an emergency situation. If you are worried about your baby s colour or breathing, call 999 immediately. 7
Caring for the equipment borrowed from the ward It is extremely important that the equipment borrowed from the hospital is cared for in an appropriate way. Store the equipment in a dry, smoke-free environment. Keep the equipment clean and out of reach of children. Clean the equipment with a soapy damp cloth, as demonstrated on the ward. Take care not to expose the electrical components to water. Ensure wires are kept neat and tidy, and electrical components are always covered. Keep the equipment turned off when not in use. Do not allow the battery to run out. Please call the hospital if you have any problems or concerns about the equipment loaned to you, as it is very important that the information collected about your child is reliable and correct. Please return this equipment on the date discussed with you. If this date changes for any reason, please let us know. 8
Patient name: D.O.B: Hospital number: Date: Affix patient label I, parent/guardian of have agreed to the terms and conditions of borrowing the equipment checked below. I have been taught the appropriate use of these items and how to care for them. I will ensure they are returned to Savannah Ward on the stated date. I have been provided with information regarding the process to follow if there is a fault with the equipment. I understand the equipment on loan is a tool for guidance only and to seek advice if concerned about my child s health and well-being. If the items are not returned, or are returned in a manner that they can not be used without being repaired, I understand the Trust has the right to charge me the full amount of such equipment, or the repair, if the cause of the damage is due to poor care of the equipment. Please sign for the items of equipment that have been loaned to you: Equipment Serial number Signature of parent/guardian Weighing scales Carrying bag Instruction manual Pulse oximetry monitor Probe Instruction manual Agreed date of return Parent s/guardian s name and signature: Staff name and signature: 9
Healthcare professional notes Please record any episodes of assessment you have carried out on this baby, including any comments that you think may be helpful in future assessments. Please write your name and designation next to the entry. Please note that these pages are meant for small comments and should not be used as a substitute for the patient s hospital records. Leaflet number: 3899/VER1 Date published: May 2014 Review date: May 2017 2014 Guy s and St Thomas NHS Foundation Trust 10
Feeding Chart
BABY S NAME: BABY S DIAGNOSIS: Date SaO2 Heart rate Weight in kilograms (kg) Weight difference in grams (gm) Feeds in millilitres (mls) Total Monday Tuesday Wednesday Thursday Friday Saturday Sunday PLEASE REMEMBER TO BRING THIS FOLDER WITH YOU TO ALL CLINIC APPOINTMENTS AND HOSPITAL ADMISSIONS