Scan day for Alfie.

Due to an ongoing diagnosis Alfie has to have a renal scan every 3 months at the John Radcliffe Childres Hospital in Oxford. This place was our home for nearly 8 weeks when he was tiny, we went home for 1/2 an hour in the whole time we were there and that was just to organise all the medical equipment that was needed for his return home. For the last few days we actually lived on the ward to learn to manage the trachy ourselves at home. Nursing/paliative care was pretty much zero. 10 mins once or twice a week to drop off supplies was about it. Babysitters (Mum and Kate) had to learn to do a trachy change to let us go out for lunch occaisionally.

All the landings shown became part of our routine, he was on all the ward floors at some point and we lived on the top floor in Ronald McDonald housing (a life saver in those horrible days). And the one floor with no wards we now see every few months.

Alfie is rare creature in that he is a breath holder, started at 1 month old and could even do it with a trscheostomy! He has/had posterior macroglossia which when tiny totally blocked his airway. Thats a big tongue at the back to you and me. This means even now 2 years after the trachy came out we have to worry if he does a 'normal' toddler breath hold.

This he abley demonstrated today in the radiology waiting room post scan! The scan freaked him out because he is ticklish to the point of pain on his back and got v upset, minor breath hold, goes a bit blue, I blow in his face and carry on as normal.

Second one he holds his breath, walking the full length of the waiting room but then takes it too far and can't start again. He doesn't pass out just panics and can't get a breath in. I am fairly cool with his going blue (really scares any novices that see it) but this one got me. Thankfully Mum was with me and could yell for help. In typically Alfie style he took his first faltering breath when they turned up, and giggles at all the attention.

This is the child that on his first check up post discharge had the whole crash team out in the hospital coffee shop because he choked and went full on blue. First and thankfully last emergency trach change for me. So we have a bit of a rep there, waiting for the sarky email from his consultant now.

Sorry this is so long but it always catches me out when we go, brings back so many memories and then he does his worst blue in 12 months, ho hum, just as you relax they put you back on your toes!