A Big Week - Day 8

Day 8??!! A week is only supposed to have seven days isn't it?...this week is too long!

Well on the plus side Immi had a 4 min seizure at about 8pm last night. So that is helpful.
I'm not sure I should write first thing in the morning really. Yesterday evening Immi's canula (the tube in her hand) got stuck so they had to change it. It has to be flushed out with water to keep it clear and the gap between flushes had been a long one. So they put on cream to numb the area on her good arm elbow and also her dystonic arm. After a couple of hours (things are slow on Sundays) the nurse practitioner came and out the canula in. Immi was NOT impressed and the whole ward heard about it. We were all numbskulls!! Kudos to the NP who was patient and got a good line in eventually!
At change over I asked the nurse taking over if it could be flushed a bit more often as it was the third one and very stressful. I got told the standard flush time is 8-12 hours and they already did it at 8hour intervals. I held my ground and said that I understood that but that she needed it sooner as I didn't want her to have to go through it again. They agreed to do it at 6hrs.
We went to bed and had slept in and off. It was a busy shift with 2 going to surgery in the middle of the night, but I was disappointed and stressed when I became compus mentus enough to realise that the last flush had been 9.30pm and it was now 5.30am. I realised that the hand over nurse who I had discussed with, was a student who wasn't even the one doing the canulas. Finally a nurse came (at 6.25am...you are all witnesses!) and flushed the line and thankfully it was fine. I looked over at Immi and her dressing has ridden up. So much so that bolts are now exposed and I can see them drilled straight into her skull.

 All that, mixed with a stinking headache has left me feeling very vulnerable this morning.
Nothing has really changed. Everything is the same as yesterday actually slightly better in the fact that we have had a readable seizure. But it is amazing how tiredness and stress can change your perspective.
I have to admit to, this morning pulling my sheet up over my head (the cameras are on all the time!) and having a cry. A mix of fear and tiredness and being hit with the enormity of what is actually happening right now welled up inside me and threatened to overwhelm.
BUT GOD.
Many would say they found the strength inside them to stand strong. I don't think I can testify to that. But I do feel there is something/someone....God, who is walking beside and lifting me when I need it.
I met a mum and Ronald McDonald the night before last and she is overwhelmed. She is tired and scared and it is coming out as anger mainly directed at staff but it is in her whole demeanor. I understand. I can see easily how this happens. The overwhelming feelings either tear you apart or you have to project them onto somewhere or someone else. I am so thankful that I have someone to pass all my fear and frustration and overwhelming feelings onto and He is big enough to handle all the crap I pass onto him. I dont have to project onto the staff or onto Murray or anywhere else as I give him my rubbish. Its probably a good job none of you hear those prayers- they need some sensoring! But I reckon I'm in good company...there are plenty of psalms when King David lets rip at God about his rubbish and he was described as a "man after God's own heart". So I will give him my crap and have a cry, pick myself up and stand strong again because "He lifts me out of the slimy pit, out of the mud and mire. He sets my feet on a rock and gives me a firm place to stand." Psalm 40

Ain't nothin glamourous about this....lol!

Update: Dr came round and one of the wires has come undone and needs fixing. So a new bolt will be put on this morning and then redressed....they are talking about op to take out electrodes tomorrow....