Cranial scan???

[25weeker]

Foogirl Yes I would be very interested.

 

[Marleysgirl]

We were always cleared out of the room (8 cots/inci's) for ward rounds. I can remember kicking up a stink one day because I was trying to get Andrew to latch, and they insisted that I stop and leave the room for an hour.

Ward rounds were held around 10:30ish in the morning, and late afternoon. We always visited lunchtime and early afternoon, so it didn't clash too much; the Consultant was in her office during this period and would either wander down to find us (having learnt our routine) or a nurse would go and fetch her. Her "be there in 5 minutes" turning into 30 minutes would drive me nuts, but that's just the kind of person she was - she was A's consultant until his 2nd birthday, and always ran late for his appointments.

Jen1802, the attempt to move A was stupid. Somebody thought that because of my home address, I should be in the neighbouring PCT & hospital once he was well enough to move. They were wrong, I was actually in my "local" hospital. But I walked in one day to be told by the nurses that they were moving him either that afternoon or the next day ... You can imagine my reaction !!! I think we must have told a dozen people that afternoon that they were wrong, he shouldn't move, and that we would never give our consent to the transfer. I even wrote it in huge writing on his notes for the day. Eventually one of the consultants (not our usual, she wasn't on) checked and apologised.

 

[Lottie86]

When Iona was in intensive care we could stay during the consultants ward rounds even when they were discussing the other babies, when she moved to high dependency you were not allowed in during ward round even when it was your own baby being discussed. It drove me absolutely mad!

Once she was out of intensive care we never saw the consultants to speak to and the nurses generally just gave you a 'basic' update and depending who was on they often just read out the chart at the bottom of her incubator/hot cot to us which we were perfectly capable of reading ourselves whereas when she had had blood tests, cultures etc done I wanted to know what the numbers were, exactly what infection it was she had and detailed info which some of the nurses were never keen to tell me (a couple of the nurses said they were just not used to parents who were so clued up and understood specifics and they found it a bit unnerving)

Since we got transferred to sick kids Iona has always been in a single room (so we are obv always there for doctors rounds and they are quite happy to give me specifics as they know that that is what I want) but if she was in the 5 bedded bay then we would be allowed to stay during ward rounds even when they were discussing the other 4 patients in the bay.

 

[Jen1802]

Foogirl I think that is exactly what the consultants should be doing. I think a weekly one on one with parents should be standard procedure across all the trusts. Even if nothing has happened in the space of a week, it would be reassuring to know that should you have any questions you know you have this dedicated time that you can address them with the person calling the shots so to speak.
Lottie86 that was the only way we were ever really given information about what had been happening with Juno, through the nursing staff. Don't get me wrong, in most ways I think they were the very ones who had a better idea of how Juno was doing as they spent the most time with her. The consultants came round twice a day but the nurses spent entire shifts with her and knew her better than the doctors and my personal opinion was that it was because of them and their daily observations that she was able to receive the correct treatment by communicating this to the doctors. Ultimately that's what the treatment plan was based on, what the nurses had observed over the course of the day. I also know what you mean about them being intimidated by clued up parents. When Juno was born I read books upon books about premature babies and complications, researched websites and of course came on here a lot and read through all the threads. It made me feel better to have this knowledge and understanding. I remember telling the consultant at the one meeting we had with her that I had been reading a lot and she said oh no, don't do that you'll just worry yourself, but if anything it made me feel the opposite! I can appreciate that she may be used to dealing with parents who immediately thought the worst case upon reading about the bumpy road ahead for preemies but I explained to her that not knowing and having her essentially "dumb down" and gloss over the ins and outs of complications worried me more than when I had a more detailed insight as to what Juno faced. I suppose they all just want to tar and feather us with the same brush and I know from being in the unit and seeing another particular set of parents that were in overreacting when their baby had to have photo light therapy because of slight jaundice why they maybe don't want us in during ward rounds. XO