Like every good tight rope walker who try to juggle you need a safety net, just knowing it is there to catch you should you fall. Well with out knowing it at the time this is what the hospital was for me a safety net.
Having Ruaidhri was like becoming a mum again for the first time only ten times over. It wasn't just a case of knowing how to bath and wind him and feed him, there was far much more involved. We where told about signs to look for, should he start to not cope well. Mr Danton had explain that just because he had been well in hospital it was possible at any point for his shunt to become blocked and that is something that he did not want to happen. Everyone kept explained how important numbers were to become in our day to day living, weight, milk volume, Sat's. How to know when he wasn't well, to be careful in case he got the cold because heart babies don't have a great immune system, and having a common cold for them could well end up in a hospital stay. I know that these are facts of having a heart child now but at the time it was scaring the crap out of me. So much so that I was starting to doubt that I would be able to do any of this. How would I know when something was wrong, I had never been in this situation before.
Being in hospital and knowing that there is always someone that is there to rescue me should I doubt what I was doing was right, should I have a question at any time of the day, there was always someone to ask, there was always someone to see that Ruadhri was doing good and that I was doing it alright with him. Why couldn't I take all these people home with me, so that I would know for sure that Ruaidhri's care would be as it should be.
We had been told that a community nurse would becoming round to check Ruaidhri stitches and make sure that it was infection free and would be there should we have any questions, and to change his tube should he pull it out which he was something he did enjoy doing, almost became a hobby for him. OK I thought that might not be too bad, still wasn't as good as what we had been used to, but it was still a net. Fishing net size of net but neither the less still something to catch me, a professional to guide me should I need it(didn't quite turn out that way).
I still couldn't believe that the hospital had the faith in us to be able to care for such a small person with a heart condition who needed to be tube fed, and so much looking after. The nurse had been quite clear that once we could feed him there was no reason for him to be kept in. But what about all the things we had been told, what to look for, what he should be kept away from. My head was spinning how on earth are we going to do this, without the help of the team that we had, had with us for the past month. They assured us that should something be not quite right or we had any questions just to ring the ward and they would be able to help us. Still 30 miles away but at the end of a phone. Great I thought, would we get given a phone like batman had to take home with us, so that at any time we could just pick it up and there would be someone at the end of it. Sadly no it would seem the NHS haven't thought of that idea yet, probably don't have the funding for it either. The last bit of advice was there is always 999. Wholly shit I really wouldn't have to ring 999 would I at some point, surely it wouldn't come to that, would it?? (turns out we did but not till later)
Without our net I felt lost and alone and not really sure how this was all going to work out, and at what point of the day we were going to sleep, there seemed so much to take in and look for and we were to do it all by ourselves with no medical staff there in case we got something wrong. And now with my confidence stripped and my nervous on the brink my safety net cut, I would have to take a deep breath, memorise the ward number and get one with things and learn a new way to do things and live.
Having Ruaidhri was like becoming a mum again for the first time only ten times over. It wasn't just a case of knowing how to bath and wind him and feed him, there was far much more involved. We where told about signs to look for, should he start to not cope well. Mr Danton had explain that just because he had been well in hospital it was possible at any point for his shunt to become blocked and that is something that he did not want to happen. Everyone kept explained how important numbers were to become in our day to day living, weight, milk volume, Sat's. How to know when he wasn't well, to be careful in case he got the cold because heart babies don't have a great immune system, and having a common cold for them could well end up in a hospital stay. I know that these are facts of having a heart child now but at the time it was scaring the crap out of me. So much so that I was starting to doubt that I would be able to do any of this. How would I know when something was wrong, I had never been in this situation before.
Being in hospital and knowing that there is always someone that is there to rescue me should I doubt what I was doing was right, should I have a question at any time of the day, there was always someone to ask, there was always someone to see that Ruadhri was doing good and that I was doing it alright with him. Why couldn't I take all these people home with me, so that I would know for sure that Ruaidhri's care would be as it should be.
We had been told that a community nurse would becoming round to check Ruaidhri stitches and make sure that it was infection free and would be there should we have any questions, and to change his tube should he pull it out which he was something he did enjoy doing, almost became a hobby for him. OK I thought that might not be too bad, still wasn't as good as what we had been used to, but it was still a net. Fishing net size of net but neither the less still something to catch me, a professional to guide me should I need it(didn't quite turn out that way).
I still couldn't believe that the hospital had the faith in us to be able to care for such a small person with a heart condition who needed to be tube fed, and so much looking after. The nurse had been quite clear that once we could feed him there was no reason for him to be kept in. But what about all the things we had been told, what to look for, what he should be kept away from. My head was spinning how on earth are we going to do this, without the help of the team that we had, had with us for the past month. They assured us that should something be not quite right or we had any questions just to ring the ward and they would be able to help us. Still 30 miles away but at the end of a phone. Great I thought, would we get given a phone like batman had to take home with us, so that at any time we could just pick it up and there would be someone at the end of it. Sadly no it would seem the NHS haven't thought of that idea yet, probably don't have the funding for it either. The last bit of advice was there is always 999. Wholly shit I really wouldn't have to ring 999 would I at some point, surely it wouldn't come to that, would it?? (turns out we did but not till later)
Without our net I felt lost and alone and not really sure how this was all going to work out, and at what point of the day we were going to sleep, there seemed so much to take in and look for and we were to do it all by ourselves with no medical staff there in case we got something wrong. And now with my confidence stripped and my nervous on the brink my safety net cut, I would have to take a deep breath, memorise the ward number and get one with things and learn a new way to do things and live.
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