Operation 1 of 2019!

Operation 1 of 2019!

The year that is, not 2019 operations. Well, we hope not anyway!

Yesterday we got the letter from Sheffield Children’s Hospital. Rory’s first visit to theatre this year in the second attempt to lose his tube!

We had our appointment with Ravi, the absolute legend of paediatric airways, and we voiced our opinon that perhaps last year the timings failed us as our first appointment was 9 weeks after our clinic appointment. This year our clinic appointment was 5th march, but we didn’t want to have to wait until May and potentially risk being too close to winter to take any risks and perhaps miss our on the opportunity for life without the tube!

He clearly listened. Of course he did, we have a great relationship and he values our opinions. But we didn’t expect the appointment to be 3 weeks later.

Head fog! Not mentally prepared for this yet!

In theatre Ravi will assess Rory’s airway and make a plan as to whether we can attempt trial decannulation (life without the tube) or whether he needs a reconstruction and if he does, whether this will be single stage or double stage and exactly how long we should expect this process to be, how many hurdles to jump, how many days or weeks asleep on the ventilator. Big deal!

Whilst he is down there, Ravi is also going to attempt to burn off Rory’s scar tissue with a laser as it was too tough to chop out last year with the other tool he used.

And. Breathe!

Positive thoughts: at least we will know where we stand and if it isn’t to be this year, we can shelve it and get on with life and enjoy the Summer. If it is to be this year, then we have plenty of time for the operation / decannulation before winter sets in.

Negative thoughts: i’ve barely got my breath back from this weeks drama. I can’t think. its all happening so fast. aarrrrgghhhH!

Put it in your diary folks: 26th March!

Fingers crossed!



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