[ Post a Response | ECHO Dialogue ]
Posted by Pippa Duffy
on August 22, 2009, 16:21:14, in reply to "trying to cope "
86.159.153.221
Hi Susie
It might be worth contacting Jo Wilson or Jessica Cattermole (contact details are on the website) as they may know of a family who have a child with this same condition, possibly living within 'cuppa & chat' distance. Our son, Leo, was diagnosed antenatally, so I don't have the experience that you have had of suddenly finding yourself trying to negotiate unknown and frightening territory, but I can appreciate that you must want to keep pinching yourself and asking if this has really happened........ I'm sure that the doctors and nurses did their best to reassure you prior to discharging you, but it's very scary initially, knowing that your child has a heart condition, and having to administer drugs can be a bit daunting (and challenging once they get old enough to realise what's going on!) It may feel impossible at the moment, but somehow, it does become part and parcel of life. I found that what helped me was to be really clear about my son's condition. I asked LOTS of questions, sometimes several times! And I wanted to understand exactly what the medicines did, and also what the 'red flag' signs are, and made a note of my son's 'typical readings' in terms of his breathing rate, blood pressure etc. I have found this to be especially useful on the occasions where I've been a bit concerned and taken him into our local children's hospital for a check up. For example, Leo's Oxygen saturation levels are different (he has a 'shunt') and so if I didn't say anything to the doctors/nurses, they'd go into a blind panic when they saw the sats monitor! So if you haven't already, then make sure you have a written note of what your daughter's 'tick-over' looks like, and keep this with you. I also keep a copy of Leo's latest heart assessment in his little red book, so that it's to hand if needed. It is useful for you to have somebody else who sees your little girl regularly (could be your partner, or your Mum, best friend etc.) and talk them through her condition and then together observe how she breathes, whether it's quiet, noisy, effort, easy etc. her colour, her temperature and other useful indicators. That way, you have somebody else who 'knows' what your daughter looks/acts like when she's healthy. If you are then feeling anxious, you always have a 'second opinion' close to hand to help reassure you, or indeed, to help you make the decision to take her in to be checked over. And there may be times that you feel you want to do that. Your Mum instinct will grow to incorporate this new aspect of your baby, and 99% of the time, that instinct is right when it comes to the heart side of things too (I like to think that it's your heart protecting hers!) I have also found this forum really helpful in terms of support when I'm feeling wobbly and also in terms of practical advice. Lots of 'old hands' here who know all about the sneaky ways of getting meds into cheeky small people! What we all have in common is we love our amazing children dearly, wonky heart an'all. So welcome to our little club!
Pippa (Mum to Amber 4, Jasmine 2 and Leo 9 months) x
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