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Following on from our trip out on saturday there has been some repercussions. When we were first told that we could start to take Dan out it was like there was finally some light being shone at the end of the tunnel. Julie asked them “what can we do?” to which she was told “whatever you want?”, to which she replied “what take him home??” but obviously she was told no. What she was told was that we need to start going around inside the hospital, then around the grounds, then to wollaton park etc basically all the place we had before to “build up our confidence”. Now we have been caring for Daniel now since he was born over a year ago and we have been through and seen him go through more than most parents will in a lifetime or at least I hope so as no-one should have to see a child go through all Dan has. We have nursed him through some of the roughest times taking on the role of both parent and nurse at times. So our confidence with Daniel is pretty solid moreso than most parents and certainly moreso than with our other children as we have seen the extreem’s of Daniel and know the warning signs. So based on this information and feeling very confident with our child we took him and the other children to the local park, local to the hospital I mean, so that we could finally be a “normal” family just for a short while at least. Now when Julie got to the hospital Monday she was confronted by Dan’s lead nurse who said to her “I thought we had a plan?”, now this “plan” was not a plan that we had been involved in we were just told what it was but anyway lets continue.

The nurse said that they was “very cross” with us because we had gone to the park despite the “plan”, now I agree that we did not stick to the plan but again we felt very confident in caring for Dan. She was asked what we would have done if the ventilator had broken, Julie said we would have brought him back; In actual fact we would have used the “bagging” circuit to keep him going. However, at this point it transpire that this would not have been possible as a vital piece of equipment was missing. When I was told this I was furious as we had not been told that this was missing and that it’s absense meant that Daniel could have been put at serious risk as we could not maintain his airway without it regardless of where we were. Furthermore Julie was told today that we will not be able to take him out on our own until this “vital piece of equipment” arrives. This in my opinion just goes to prove how important this is and if it is indeed this important then why previously were we told that we could go out on our own. This whole episode has quite frankly left me very disillusioned about what to believe and whether we should ever have been taking Daniel out regardless of where we went.

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