Better Days

Today Dan has had a much better day. His oxygen has been weaned down and his gastric losses have halfed. He has been happy and smiley again so we took him for a walk to the university park. He has eaten solids at lunch and tea for the first time ever, he never gags anymore which is so amazing. When I think of how he was to begin with I am so proud of him. Now he just has to stop gagging at having his teeth brushed. I questioned the anti biotic again and they still feel Dan is better on them because is it better to treat with an anti biotic that covers the MRSA and risk getting immune or is it better to wait and see if he develops it from this on going cold??? They confuse me because I am told these kids carry it and do not develop the disease but now they are treating it anyway. I hate the fact that I have to trust them with something that is so precious to us. I am scared they will get it wrong like they did over his feeding when he got pnemonia, septicimia and meningitis.

His nurse today has been great and they have been helping me try and remember CPR. They said to learn it in stages and not to put pressure on myself to learn it all in one go and they are on at the weekend and will go through it all again. I feel more comfortable learning it like this and being taught from a couple of people rather than input from all the nurses that look after Dan because it gets really confusing because they all have their own way of explaining it.

We just want him home but because of nhs redtape it isn’t happening, it is so unfair.