Strange encounter with Birmingham's Gastro team yesterday, Evan was born with dilated loops of bowel and restrictions which saw him having two bowel ops one at just over 24hrs old and one in May which resulted him having just under 60cm of small intestine, so the reason he was to have his heart operation in Birmingham was due to Birmingham being the Royals referral centre, we could have been in London earlier but we were told Birmingham was the best centre as it could look after both.
The Gastro team had prescribed his PN before even physically assessing him which had caused concern to both Jenny and his ICU nurse and only after some persuasion from the ICU nurse they appeared and asked us 'so what do you want us to do?'
We thought the point of Birmingham was for a second opinion - and their next suggestion was 'did we want to transfer Evan to them for further gastro referrals' this had a simple response - "no we are happy to go back to Belfast."
Aroung 11:30 this morning he has had his chest drains removed, and those big eyes are starting to open as he follows the nurse around his bed, it does help she's blond, as something we learned from the Royal Evan prefers blonds with smiles & blowing kisses.
As he starts to stir both legs are going as usual, in what his nurse has described as a cute little 'jig'.
The cute jig has turned into hard work as neither asleep nor awake Evan is refusing to keep the oxygen mask on, and as he comes off his sedation he is highly irritable. So the doctor has prescribed another dose of meds to calm him back to sleep, so all good.
All was good now x-rays have indicated that Evans Central Line is just about connected to the vein in his neck, as he has grown the line has moved further and further from the position it should be, so it may need to be replaced here. So there maybe another procedure also his gastro peg that he is fed through is different from the one they use here, so a decision will be made tomorrow if it needs replaced as well.
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