A teaspoon of pooh this morning counts as two steps forward, but he has an infection and is on antibiotics again today so that is one back.
The hassles of the morning had tired him out and we just had an hour each of holding him and enjoying his sleepy company. The best thing about it was the lack of tubes. He only had the two tubes going up his nose - one to his stomach and one deeper to his upper intestine. he was free to wriggle and stretch for the first time and not even a oxy/pulse sensor to disturb his peace. He quickly settled and was fast asleep by the time Cathy handed him to me.
During his long cuddle with me he gradually had his tubes reattached - first a heel canula connection for sugar solution, then antibiotics, then an extension piece to allow three fluids to pass into one canula and then fluid drip; lastly his feed of four ml milk to his nasal intestine tube and bypassing his stomach.
His legs and feet were a little active and showed smooth movements with good muscle tone. He was moving toes individually and lifting/pointing his toes as he moved and stretched. His hand to his face is of interest to him and he has been touching his lips with his fingers.
I learned yesterday they send MRI scan results by FAX machine to the consultant in London and I awoke in the night thinking - 'hey FAX is terribly unreliable and adds all sorts of corruptions to images' perhaps they have got it wrong and he is not as bad as they think. In any case he is what he is and it does not make a jot of difference if the fax was a bit poor. The real test is time.
Starting Monday we are trying to get some routines going as normal so I am back to work, Cathy is developing a visiting routine, Emily is back at school and Granny is going home (for a much deserved break from it all for a while yet still on-call).
Your cards are a sea of colour in our lounge and the words you have included are so thoughtful and wonderful it is hard to believe we have so many sensitive and well-chosen friends to support us in our hours of need!! I can't put into words how moving it is be receiving generous support especially as my motto has been "It is better to give than receive". Clearly my motto is not always true.
Thank You All.
No new pics today as I drew the line at posting a picture of 7ml of pooh... |