So after two seizures today, a third cannula blown and one electrode pulled out, we have been told that they will probably operate again to remove the electrodes tomorrow.
She is on the reserve list, rather like being on standby at an airport waiting for a flight, so it depends what emergency ops need to be done or if anything planned fails to happen for any reasons then Immi will go in. Thankfully it is a shorter op than the first, but it is still an op all the same and removing the electrodes leaves her open for infection. I thought I would be calm, a kind of packing up to go home, but as I sit here in Ronald McDonald I find myself unable to sleep and wishing that I was with them on the ward.
Finally fell asleep after realising that I think the cafe must have given me a full caf not decaf coffee as I had asked for!
Sat waiting now to go to theatre. She had her meds before 7 and so now we wait....
Update....they have decided to do some electrode stimulation this morning and then the op later today (if it happens). What does electrode stimulation mean?
She has 16 electrodes in her brain that literally been recording her every move and thought! When looked at on the trace it can be seen that the activity is quite spread out and general but there does appear to be one electrode that leads the others my a millisecond or so. So this is the one they will send a small current through and see if they can stimulate a seizure. By doing this it may show that this is an area they could operate on. To be honest I think its a bit of a long shot as there is so much activity in the electrodes but who am I???!!
Update 2 (can't get it to shift from central justification!)
So they did a good long session of stimulation as Immi has been shiftwd to the afternoon op slot. However, despite stimulating every electrode and then the one that was most promising given a higher current we failed to stimulate a seizure. The initial deduction from this is that her seizures are really quite generalised and it may be unlikely that they could operate with any measure of success. Having said that, it is very initial broad brush srokes and all of the readings of the week will be read and taken into account. From this they will make a decision about anything thwy may be able to do.
So now we are sat waiting for the operating theatre. Immi is hungry now as she hasnt eaten since last night and all the other patients are eating.
Feeling a bit dispondent if I'm honest. Really dont want her to have to live with this horrid disease for the rest of her life.
Update 3
So its 1830 now. Immi is off monitor now but hasnt eaten for 24 hours and hasnt drunk since 10am. She just had the mother of all seizures and has a stinking headache now. We really want to give her some food and drink but they are saying she is still going to go down next. 20 mins in and she still isnt speaking yet. Please pray they either take her down soon or phone and say it will be tomorrow.
Update 4
1850 went to theatre. 1910 back on ward...had to postpone as a baby needed looking at again. I have asked if it looks like it will be a while can they please bump her and let her have some food. Will keep you updated.
Update 5 (hopefully the last one today!)
They took her to theatre again at 8pm. At that point there was a question as to whether they could do it as we had been told to give her her evening meds so she of course had liquids (about 80ml). But the consultant was happy for her to go.
Hopefully there will be no more big news to update you til tomorrow!
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