Right, no one post, I'm going to set up another thread straight after this... Just one more moan!!!
Basically Joe started his injections yesterday as expected. He was such a good boy for his pre-injection tests. Last time he had his ECG he had to be admitted to the ward and sedated. This time DH has gone away this week with work and wanted to see J last night before he went. Joe was so brave and calm so that he could get home. Bless his heart.
A problem with Joe's blood test meant we were delayed by a couple of hours ( its already a day-long effort) but got J an hour with DH before bedtime. Lovely.
Then his temp started to rise, as expected. At midnight he had a fever so called the ward knowing I would need to bring him in because he needs to have the blood from his Hickman line cultured.
Normally you have to also have a blood test to make sure he's not neutropenic. He'd had his blood run 8 hours before - that's always been fine in the past so all good - shouldn't have to wait 1-2 hours to get those results back as he was miles from neutropenic... Oh no, not last night, need to run it again because apparently his levels could have crashed. Since been confirmed to me that its extremely extremely unlikely on his current treatment in that level of time but at 2am that has already put me in a bad mood.
They also need to take a blood sample from Joe's hand. I understand this is their policy but when your child is being pinned to the bed and begging you to protect them, it's pretty hard going. The nurse told me I could leave if I wanted. I'm not sure what good that would have done Joe so I didn't go, of course. It meant that he's screamed whenever anyone has gone anywhere near his arms today though...
Then the Doctor told me he had to stay in because he has a chest infection.
He does not have a chest infection.
He had been checked over by his consultant earlier and had had a clear x ray. No concerns at all. Night Dr decided that everything could have changed by then and that he needed antibiotics because he had a temperature. The injection gives him a temperature!!!!!!!!!!!!!!!!!! I'm all for antibiotics when necessary but they just aren't right now!
So I agreed to one dose (they give a standard one dose within an hour of arriving). I made it clear they weren't to give him anymore antibiotics without discussing with me first (he was dehydrated so had to be admitted for fluids anyway). This morning I wake up to find he's on regular Iv antibiotics. I am absolutely fuming that my clear wishes have been ignored. I wasn't even refusing treatment! Just asking for discussion first so I could make a decision. Taken out of my hands.
I spent most of the night and morning crying with frustration. Saw one of the consultants this morning who is lovely. She said she would have had J on antibiotics too due to high heart rate and low blood pressure (which was normal for Joe but last nights Dr ignored my comments and refused to verify that for herself) and concerns he may have an infection in his line, although unlikely it could make him extremely ill pretty fast. I get that, a clear explanation. And completely different kind of infection from the ones the Drs were banging on about last night anyway.
Joe's consultant came along later as well and was also lovely. He agreed it was ridiculous to suggest J had a chest infection and to ignore the earlier neutrophil count. He would also have had him on antibiotics.
I'm just raging that this couldn't be discussed with me first. I have never refused any treatment for Joseph. I have his best interests at heart and being completely dismissed all round was so disheartening. It was good to know the consultants were supportive of me though.
The thing is, the way we were treated last night makes me not want to phone in next time he gets a temperature from the injection and that's not good for anyone.
Gah. I'm calmer now, anyway, and off to start a new thread.