- 09
- Oct
Danny has been a little off colour today, his teeth and his cold probably. He has also been a little wheezy the last couple of days on and off but this isn’t unusual when he has a cold as he gets so many more secretions.
He makes me smile at the moment because he always wants to be on his feet, when we try to sit him down, his legs just lock in the standing position. He is constantly trying to pull himself up, mostly on people.
Danny also does the actions to ‘wind the bobbin up’ beautifully these days. If I ask him for a kiss and put my face near his, he goes to kiss me. He is so awesome.
Dan’s consultant is on holiday for the next two weeks so we have had more hassles from the hospital today.
Rob spoke with his consultant last week about Danny’s peep and it was decided that his peep would stay at 7 for the next month, till the beginning of November. However yesterday when I arrived I was told that the consultant on was wanting to reduce his peep further even though it was only reduced less than a week ago and even though Rob had make an agreement with Dans own consultant. Needless to say we were not impressed. However the nurse and another doctor yesterday convinced the consultant on that this was not the best thing for Danny at this time.
When I got there today I was told that infact the same consultant was still planning to reduce his peep tomorrow, even after being told of Rob’s agreement with Dannys own consultant. When I told Rob he was furious so he rang and asked to speak to the consultant to discuss this but they were unavailable so Rob left his number for them to return his call, however this did not happen so he wrote a letter stating our wishes, lets see if they adhere to this.
I was told that the consultant on today does wish to talk to Rob and I about Danny’s peep now but does not know when. It will have to be in the evening as Rob isn’t there till then and I am not prepared to speak with said consultant as they do not instill confidence into me as when the incident with the anaesthetist happened a couple of months ago, they told me in no uncertain terms that Danny only tolerated a reduced peep because he was a sleep. Rob and I knew it was bull because we know our child.
So to summarise, the consultant on today has said previously that Danny couldn’t deal with a reduced peep but now the same consultant wants us to put our faith in them by reducing his peep when they said otherwise a couple of months ago and believe me, it isn’t because his trachea has suddenly got better! The more growth Dan gets the better his chances at tolerating his reducing peep and whilst I realise winter is coming up and their backs are against the wall with their staffing problems, it doesn’t mean we will allow them to cut corners with our childs care and ship him to a ward. I would bring him home first.
This afternoon I was sitting watching the afternoon ward round, when they got to Dan the doctors stood in the middle of PICU discussing his care which got me thinking about confidentiality as there was another patient where they were discussing him. When we were on the neo natal unit at the city, the doctors there used to make all parents leave until it was their child under discussion so that a) they adhered to confidentiality and b) you could ask questions about your childs care knowing that there was no-one around to overhear what was being said. It’s amazing how two hospitals that are part of the same trust, NUH (Nottingham University Hospitals), can do things so very differently.
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