Never actually knowing what is right and what isn’t 

So today we had a tube changing session. We’ve finally been shown how to change Olivers tube so that we don’t have to go up to the hospital. One more session and we can do it unsupervised. 

Today’s been an eye opener. It would appear that what we’ve been told to do in the past isn’t what we should be doing.

We’ve been told if we struggle to get fluid back to put a small amount of air down it and try again and that’s fine, big tick for us 

However the previous advice (which we try to avoid anyway) of pop a few MLS of cool boiled water down the tube to help get a reading. HUGE no go. The lady training us was horrified and proceeded to tell us over and over not to do that as if it’s in his lungs because Oliver coughed and the tubes moved we’d be pushing water into his lungs. 

Our dietician has said that we should do this after me querying what I should do if we can’t get feed back as we have been told we cannot up his feed anymore. The nurses on children’s ward have done this when we’ve been up there when the tubes been pulled out and needs replacing 

I no longer know what I’m actually supposed to be doing and it makes me wonder how different health professionals can give different advice…and more seriously incorrect, potentially dangerous advice

Life’s hard enough not being able to do normal feeding without this additional blow that makes us look incompetent. We’ve been looking after him on our own for four months and it would appear that the information and guidance we’ve been being given isn’t exactly what we should have been doing. The way others have been putting the tube in and testing isn’t right and we’ve basically looked like fools when being trained 

Karen has gone away and told us that she’s going to be making some calls to speak to those that have told us the wrong thing.

Just as we’ve found our feet I feel like they’ve been swept away because we don’t actually know what information we should trust anymore. 

I don’t know if I’m angry or upset. I do know that I’m incredibly disappointed that the teams that we’ve been relying on haven’t been giving us the correct information and makes me question what else we may have been told that isn’t correct 

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