| Thursday 1st Day 20 His choice | Thursday, 1st March 2007 |
| The thing about babies in care is they quickly develop a personality and we thought quiet sleepy Charles was all there was to him. Well we were wrong. At 8 pm last night he wriggled a hand out of his mit and curled a finger around his NJ tube (deep feeding tube) and pulled it and the extra strong sticky tape out of his nose. As you know this is a four hour procedure to get in place so I am sure the air went the colour of the ward a little (not really the nurses remain calm in all situations and you never see them panic or phased by anything so they must have a room they use to go and let off steam). Not a good thing to do unless you know better than the Consultants... He is on normal NG (stomach tube) feeds and up to 9ml today so maybe, just maybe he knows best. If he is still without his white tube tomorrow then he is doing well; if it is back in he has been a little pickle and set himself back a few days. Cuddles were long and he was little less restful as his stomach coped with the milk and is getting into the routine of regulating the release into his intestine. His hand grip is now very strong - to the point where I really do think he could support his own weight. You know that thing where you know something is going to happen sometime and you just don't know when, but it will make you laugh. Well it happened today. Cathy was changing a big poohy nappy and just when she was about to change the nappies over Charles did his fluid Ark de triumph impression. A great golden arch moved over the side of the cot, over his blanket, up Cathy's arm and on her blouse... Wasn't in the least bit funny and of course I told him off in a very serious tone of voice just to show my disapproval (not). After changing clothes, bed sheets, blankets and wiping up the mess I was not so convinced it was hilarious, but hey you had to laugh. I have been pondering the dilemma I am in for a few days now and I can't quite get the expression to say what it is. It is that feeling you are missing something when you go into a room and everyone appears sad but you are happy. The feeling you have not yet seen that piano falling on your head. A piano that everyone around you can see. They can see it plain as day, can't stop it, do not know what to say about it and feel they must allude to but not actually mention. They are playing a game where they are not allowed to say "Did you know you have a piano about to land on your head?" As one person said "You do have to beat yourself up over it sometime...". A bit like the kid that throws a snowball at a little kid, misses and hits the school bully; he knows he is gonna pay he just doesn't know when or how. That's the dilemma. Sometimes I think it is a piano and other times it is soft tissue paper. Either way worrying about it can't help and these are just metaphors for preparing for things to be worse than I imagine they will be. For the first time yesterday it suddenly occurred to me I and Cathy and Emily might not be able to cope with Charles at home. That he might need 24hr care for the rest of his life. I had not thought he might not be at home with us for most of his life - I found that possibility most upsetting and hard to come to terms with. I feel like writing poetry now and the times I have done that in the past have been when I have been at my most stressed and downbeat. You have been warned. We were so busy with him we forgot to take some more pictures - tomorrow we are all going in after Emily gets home from school so we will make sure we get some then. |
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| < Back to Baby | Posted by Neville Clark, 23/08/2010 |
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