After what felt like an eternity, a couple of phone calls to our parents, lots of crying and sobbing in total despair we were finally reunited at 0020. 15 hours after we held him to sleep. 

Yesterday took about 10 hours longer than we anticipated. Reedy was taken for a MRI scan which took hours longer than planned this made the surgery later starting. Although no major complications, one blood transfusion, it was trickier than the surgeon said and thought it would to have been. 

As time ‘on the table’ goes on the scan images are not as accurate because of the swelling etc so although they have done extensive disconnection they have not completed the planned operation. 

This means that the chances of seizure freedom are slightly reduced, but this may be enough to stop them. Time will be our only indicator. There was brief talk that he may have to have further surgery in the future. 

One nurse who had “popped into theatres” came to give us an update: when we said “he is handsome isn’t he” she replied “well I cannot see him due to the drapes, but I could see his brain throbbing nicely on screen!” Not sure I ever thought I would have that convo! 

Thankfully he is safe and back with us, our co-sleeping practice is paying off as this seems to be the best way to calm him down. 

Reedy has been very distressed, pulling out most lines that were in place, two bed changes and a little sedative to assist him to sleep and rest, we have made it through the night. 

Some key things have already happened that indicate a positive outcome, he is moving all of his body, imagine thrashing octopus! He has shaken his head to say no! He pointed to us, held a bottle and he found his dummy and put it in his mouth. All very positive signs. 

Today we will mostly stay in our pjs on HDU attempting to catch up on some sleep. 

Reedy will go for a CT scan and have some bloods taken to check that there is nothing sinister going on. 

Better get back to cuddle duty… X 



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