Sally's World

Well, I have still had no news of the results. I phoned the hospital every day last week, and also this morning, but they could still tell me nothing.

The interesting thing is, the neurologists told us that until they had the results from these tests, they could not determine the next step, they couldn’t decide on the what follow up tests were needed and so on.

So I was more than a little surprised when I got a letter in the post this afternoon from the clinical neurophysiology department at Guys hospital, asking me to take Deion for muscle and nerve tests in a couple of weeks time.

I rang the department to find out more, they were very helpful with regards to telling me what the tests entailed/sedation/consent forms e.t.c. But all they could tell me about the reason for said tests, is that they were ordered by our own neurologist based on results from Deion’s previous tests.

Wouldn’t it be wonderful if someone could phone me, or alternatively phone Deion’s GP or Community Paediatrician, so they can tell us those results? As usual, as parents, we are the last ones to find out.

I guess we are a little confused, the doctors said the tests were necessary, they said we shouldn’t wait, that he may have a treatable condition….this is why we went ahead, and this is why it feels like it matters so much to get the results and move forward.

So I guess its good news that we have our next step, I just feel as though I have no clue what is going on, and he’s my baby (although he’d kill me for saying that). Maybe I’m wrong to feel as though I have more right than anyone else on the entire planet to know what they ‘think/suspect/know’ is going on inside his body!

Its not easy for us parents to place our trust in doctors, are we expected to do this without question? Are we supposed to feel guilty for questioning their methods?…perhaps if someone could re-send a copy of the rule book with regards to what we can and can’t ask these doctors about our own children, that would be great!!! I seem to have misplaced mine.

I seem to continually annoy doctors’ by asking questions about my own children...if I ask a question about the next step…or god forbid, time scales, I get looked at as if I’ve just suggested ritual animal slaughter or told them I listen to Barry Manilow records, either way, they look at me like I’m quite mad for questioning them.

I doubt it will put me off though, unluckily for them!

Take care

Sal xxx