Cardiac update

Glenfield appt with Dr Duke today.

Theo was peeling the ECG stickers off his hands, feet and torso as fast as the technician was able to apply them and then proceeded to help guide the radiographer's hand and ultra sound wand around his chestduring the ECHO. When he got bored of the U/S imaging, he wrapped his legs around her arm.

Had to laugh when Dr Duke described Theo's recent renal failure as 'deranged kidney function'. I am certain that this is the true medical term but taken from a mothers context it seemed to apply quite well.

Unfortunately, the renal function is still imperfect and even worse, as we suspected, Theo's heart function is diminished since some of the drugs had to be removed from his regime. It isnt contracting so efficiently as before. He is still coping well in many ways and there are no signs of heart failure which is where we want to be but the ongoing concern is that without the medicinal support his heart will struggle and the need for ventilation will increase again rather than decrease. So I have to be back at Glenfield on Monday morning at 9 am (so long, social life plans), for Theo to have further blood tests and another ECHO.

Realised earlier on that I have been worrying about our life in the long term, anxious that we may never 'get back to normal'. It dawned on me there and then as it took me 20 minutes to load up the car with equipment, nappies, theo and pushchair, that this simply is normal and unfortunately liking it or finding it pleasant or easy has nothing to do with it.
Theo's progress and adorable smile may give heartwarming pleasure but no, contrary to popular optimism, it doesn't help with the frustration and anxiety. If anything, they provide a momentary lift followed by the most disgusting drop back to reality, which is a bit like that drop on the black hole at Alton Towers. It happens and you cant see it coming.