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(From Jennifer's phone)

Today has been a huge day from the 4am start whilst I lay sleeping next to Reuben in his hospital bed, to be told his OR/theatre slot was at 7am.

I feel almost fraudulent for the kind things everyone's been saying here: I don't mean to belittle any of it, I can just vouch for myself as the mother who openly weeps in the hospital bed beside her child when he's asleep or struggles so very hard to hold it in when his eyes open and dart around momentarily, lest he sees.

The pager went off prematurely which, we had previously been informed, would not mean good news. Emerging from the OR, the throat surgeon announced good and bad news. I knew the bad news meant the trach was back in and the good news turned out to be that the stoma hadn't closed and they could literally just slot the trach back into the hole without needing to have Reu undergo another surgery.

The surgeon emerged sincerely unable to determine the best course of action: whether Reu should have the trach out with the prospect that a further bout of multiple illnesses would again send him down this terrible ICU path or give him an opportunity to be trach free.

There's some damage to his airway, ironically caused by the tube from the ventilator, which in turn ironically lead him to having the trach in the first place nearly 3 years ago. So too there is swelling from reflux and from the effects of 4 infections he's fighting: Coxsackie virus, H flu, Candida and Pseudomonas. To go with this cocktail, there is a pintfull of antiobiotics and narcotics.

I am on such a terrible rollercoaster of emotions at this moment and feelings come and go which I know are not founded, such as that I have let Reuben down very badly. Since our trip to the UK to see my family with the boys on Sunday is now cancelled, his school ended today on the cusp of his 3rd birthday and thus all his therapeutic services too, Monday feels like a huge black hole ahead of me: for the first time in his life, I have nothing arranged for him, therapy, surgery, school, procedures, appointments, assessments. His school plan has been based on decannulation too. May was to be the month with my parents in the UK, having the ability to look after both boys, a challenge which is now impossible with the trach. A dream gone to the wind. It feels too the dream of the 6 month countdown to decannulation of the trach has been a cruel and fruitless journey. Perhaps with time and sleep, I'll see it as the setback the Drs are referring to it as.

I also wonder how I will explain to Reu when he asks about school that it's all over, when he asks about his trach, that it's not bye bye, when he asks of his beloved therapists, that he will no longer see them. He's about to go through huge changes in terms of his care and I feel helpless right now.

I helped make the decision to ween Reuben off the narcotics which would pave the way for him coming off the ventilator which he successfully achieved. As the effects wore off, Reuben starting to emerge again for the first time from an almost comatose state since Sunday, I could see him shaking with withdrawal yet he found the spirit and joie de vivre to lift his little hand and attempt to formulate so very precisely the 6, 7, 8 o'clock from the Cuckoo Clock song we sing at school. Lying next to him on his hospital bed, I steadied those fingers, such pride in my heart for him at his bravery.

Reuben may be fit for coming home tomorrow, to a place where he can continue to heal. I'm full of questions and thoughts and thus needed to write before a bath and bed. I'm so deliriously tired right now I'm surprised I can string anything but a few words together.

The pic is from Jennifer's phone and I didn't realise she also had the video turned on when I was singing this to Reuben along with suctioning him. I'm actually glad she didn't say because I would not have agreed to a video of me looking so rough from sleeplessness and a little wretched from sleeping rough but with it comes a precious moment captured. Funny when she sent it through this evening. Silly pizza song