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If you want to make monetary donations...http://www.heartlink-glenfield.org.uk/ these people are looking after us by providing accommodation and hospitality at the hospital, as well as support, advice and even massive financial contributions towards equipment for the paediatric cardiac unit.
Yesterday Theo got very distressed for some unknown reason and his breathing became unstable so he was sedated and given adrenalin to nebulise his lungs. As a result he slept for the remainder of the day.
Today he was still sleepy but less irritable. He came out for a lovely cuddle with me and even deigned to open his eyes and have a gaze at his poor pathetic mama. I must look so desperate every time he focusses. No wonder he wants to sleep sleep sleep.
I had a good chat with another of his many intensivists (difficult not to substitute insensitive, purely from a spelling point of view),James, who will be attending the next BIG multi consultant discussion tomorrow morning, bright and early. He highlighted the recurrence of the chylothorax and the possibility of an operation to seal the pleural cavity, which, if successful, would mean a move back to proper food. well, monogen - lipid reduced milk. And maybe another septostomy. That's the catheter surgery where a line goes up through the groin and on into the heart, where the little hole they enlarged last time would be re-enlarged and braced with a stent. a bit like an ear grommet basically, but larger. not much though.
Theo is also being dosed close to heaven tonight for an MRI scan. quite exciting - i wish i were there tonight to see what happens but Colin has the honour. Also another heart echocardiogram. to see whats happening there. the treasure chest, the control centre.
we've joked about renaming Theo 'adolf or lenin' as he is a dictator. the amount of people submitting to his needs...my oh my.
meanwhile, tabby is quite busy emptying packs of baby wipes one by one and leaving them inside peoples shoes. good girl.
Willow
1 comment:
Hallo Willow and Colin,
I went into school on Tuesday and learned of your gorgeous baby's condition. I have looked at the blog this morning and can only begin to imagine how heartbreaking it must be for you all. It must be so difficult to be positive and rational faced with such a poorly baby and my thoughts and prayers are with you and the children. I think you are both amazing and Theo is really beautiful- love the name too!
Kate Wells
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