Well today was the day of Sophies port flush and CF clinic appointment. Ian and I managed to get Sophies emla cream and dressing on with very little trouble and off we went to the hospital.
We met Sophs psychologist at the ward and went into one of the empty bays. When Sophies nurse came in, she sensed something was up and began getting twitchy. After playing and making friends, we all decided to just go for it. Sophie was actually not too bad having the dressing off and the area cleaned but the moment her nurse tried to grip the port, she freaked out BIG STYLE. It became an impossible task for her nurse who tried her hardest but the needle must have hit the side of the port in the struggle and got bent.
Attempt number two had the exact same problem due to Soph thrashing around. Her nurse was very apologetic but it was in no way her fault. It doesn't help that Sophie is quite chunky and her port is well padded. We phoned up to clinic and we are going to re-attempt on Friday and due to how upset Sophie was and how exhausted we were, clinic will be rearranged also. We did manage to get a cough swab from Sophie though and home we came.
I'm just sooooooo fed up, firstly because I haven't been able to sort out her button changes and secondly because I cant ever see us being able to get the port flushed without sedation. Sophs CF nurse is going to have a think between now and friday as to what the plan of action is going to be. Ideally she'd like to avoid sedation if possible but obviously the port needs flushing and if it isn't possible then sedation may be our only option for now.
Does anyone else have this much trouble?
I just feel so deflated and exhausted over it all, i'm sick of having to fight all the time, i'm sick of having to restrain my child all the time. I'm scared all the work we have done over the last few months will be undone by something that only takes a few minutes. We know the emla cream had worked as she wasn't any more vocal with the needle going in than she was with the nurse just cleaning the area.
I guess we just have to see how Friday goes and see what they decide, quite frankly i'm not even going fight either way re-sedation. I'm worn out emotionally.