Saturday, June 15, 2013


Today Francis and I are swapping hospital for home and vice versa.... I'm so looking forward to sleeping in my own bed and escaping our 3 x 3 m cell.....with no natural light or external views.... there is a world out there and after Francis has done sports with the girls this morning, they will come in to see Sam and Francis will say goodbye to light for a couple of days and I will take the girls home!

This morning I woke at 5.30 to a little boy shouting out for me, 'Mum, Mum....MUM!'.  I ignored him hoping he would give up.... 'Mum, it's an emergency!', 'what is it Sam?', 'Mum, it's an emergency... I need a hug!'.  It was very cute - poor boy was tired of me ignoring him so he thought he'd try a word that he has seen makes people run!

Yesterday was confusing.  No one came in the morning so we were waiting for cardiac tests that never eventuated.  This was due to confusion amongst the various teams as to when Sam had last had a cardiac review.... anyway after chasing the nurse to chase the teams, Cardiac came and said they weren't going to review him as the recent echo and ecg review showed that all was fine.  Cardiac are confident it isn't a heart issue.  So then respiratory came in and they are unsure why he has such a high oxygen requirement when he is looking so well.  There seems to be underlying something that is unclear.... so there are lots of questions but not many answers.

Yesterday he had 3 episodes of de-saturating just out of the blue.  He got down to low 80's and only a suction could clear the goop and he'd bounce back to late 90s where he should be.  These times are distressing for him and it was interesting that he would ask for a hug just before they happened, which shows to me that he is feeling generally yuck and vulnerable at these times.  The physio was called again, but their thinking is that his lungs don't sound that wet anymore.  They did a little percussion and only a little bit of secretions came up, so they too are puzzled.

Not much happens medically over the weekend, but the respiratory Dr said he'd check him on Sunday and if these episodes keep happening today it may mean he needs a biopsy of the lung/secretions to try and see exactly what they are dealing with, although they are hoping time heals and they won't have to go down this route.

On Monday morning he is also scheduled for some renal investigations in radiology - dye studies to check out his bladder condition and why his urethra stropped draining a few months back.  Wed he was booked for an MRI under GA, but unless he has a rapid improvement I can't see this happening, as they wouldn't want to put a kid with breathing issues under anaesthetic.... but Wed is a world away in here...

We couldn't have gotten through this week without our faithful friends - juggling their lives to help the girls, sacrificing time and money to make meals, popping in to visit - we so appreciative you!  To the Scott family thank you for 'adopting' our girls and putting up with our erratic life!  To the Scott boys, thank you for sharing your popcorn and toys and parents!


1 comment:

Anonymous said...

This sounds very much like what Abbie went through at around the same age. She had various probs with adenoids and tonsils....all much bigger than they should have been. They then found her larynx was floppy and secretions would cause the desaturations. From what we recall they said your larynx opens and closes like a toilet lid but Abbie's was floppy and not closing properly. We do chest physio twice a day with Abbie and fingers crossed things improved massively but she is still on Cpap overnight. Take care. Paul, Gemma, Abbie, Lewis and Jacob x