Yes, we’ve made it to 100 Days Of Max. It is quite incredible for us to think we’ve been trekking to see Max for a quarter of a year – we’ve walked those corridors upwards of 300 times as we make our daily (up to 3 times daily) pilgrimage to FMC. Max is joy, a trial, a wonder, and our miracle.
The unit put up a ‘congratulations' sign, and he had a cake presented and a lovely, if tentative, chorus of a modified “Happy Birthday” was sung to him. Upon hearing this, he promptly flinched, wriggled, and desated. Luckily the nurses didn’t take this criticism to heart.
Again we were told that Max simply wasn’t expected to make it this far, and that the combination of his issues is almost unprecedented. It’s nice to hear in some ways, but mostly incredibly confronting.
Today’s progress was little. Bowel isn’t moving yet, and as he’s becoming a bit more ventilator-dependant, Peter (consultant) decided to change a few of the settings to try and make up breathe up a bit more and move the ‘respiration muscles’ himself. There’s also increasing amounts of secretions – in the lungs and nasal passages – so he’s being suctioned more regularly, and he’s having some more diuretics to try and remove some of the fluid on the lungs.
We have asked that if the bowels start moving overnight then someone phones us. Quite a strange request, I suppose, so it’ll be an interesting conversation- “Your son has filled his nappy!”…
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