Friday, September 7

One Week On

So, we are one week on from being home alone with our new PEG tube and I am pleased to say that actually, it is a lot easier than I feared! Last Friday, after getting home exhausted from a sleep deprived few days and understandably cranky baby, I was so worried that this was the icing on the cake and I just couldn't cope. The phone was on standby, ready for me to ring the hospital and plead that I would have to move there and become a permanent in-patient as we just couldn't do things at home.

How wonderful a new day is though-this week we have gained in confidence, Wriggles has regained her mobility and I have set up and disconnected the tube and feeds in shopping centres, museums, cafes, the bus stop and in the playground, surrounded by people. Whether a good or bad thing, I couldn't care less and actually once I am used to it, it is more discreet than I originally thought and people are just as likely to stare because my beautiful nutcase is cackling away in the buggy pointing at things and throwing Noodle the hedgehog over the side as opposed to wonder why an earth I am bobbing around with a syringe and a beeping buggy.

Climbing skills? Check! Wriggles regains her confidence and ability to move about
The most difficult thing is keeping Wriggles entertained for the duration of a feed. Luckily, the large chunk of her feeds is contained in a 10 hour night feed so we only have three daytime boluses, one of which can often been coincided with nap time. At the start of the week, I simply could not get any of the boluses, even the smallest amount, under an hour and they would often stretch on for longer to keep Wriggles from bringing them straight back up. I have slowly managed to tweak the rates up, and whilst they are not quite up to the half hourly rate we had before, they are more manageable now and things do not seem half as depressing now there are longer stretches and it no longer seems Wriggles is attached at all times to a feeding pump! The best thing, without a doubt, is not having to re-pass a tube regularly. The nasogasteric tube was re-passed so frequently and was horrible to see. But no more!  

The New Teatimes: running after toddler wielding feeding pump
Bedtime has slowly become easier. I have managed to bring bedtime forwards a little to something resembling our pre-hospital routine and am hopeful I will be able to soon do the same for the nap and to start having a mildly more structured morning. Living in pyjamas is beginning to take it's toll, especially when realising the rest of the world does not regard 9am as particularly early. Wriggles will now fall asleep by herself again, rather than the beginning of the week when she needed rocking to sleep and a great deal of comfort throughout the night. Her stoma infection is clearing up nicely and she is far less confused or distressed. I am still feeling exhausted after the stints in hospital. It is hard to switch off, and if I go to bed at a sensible time, I often lie awake for hours. Like everything else, it is getting easier just not at the fast pace I would prefer. But like everything else, I am getting used to it. Slowly. The tiring part is that whilst my toddler might need some extra care and things doing compared to another toddler, she is still that: a toddler. A full-of-beans, opinionated, lunatic, mountaineer-to-be, cheeky, frustrating, wonderful toddler. Does she care she does some things differently to her friends? Does she heck. Today we met up with some baby friends in the park, and it was so lovely to see them all excitedly pointing at each other and one of them exclaim "Lis! Lis!" at her (toddler language for her name it would seem. Other toddler-speak highlights from her friend included "Can you say please?" "Mice"). I went home feeling refreshed and like a bit of the worry had ebbed away.

So...here is to another week. Cheers!





8 comments:

  1. Well done! It looks like you are both making strides in terms of progress! It reminds me of a post of a first time mum trying to get to grips with a baby- but as you know, you just 'get it' and eventually it becomes a memory which is never as bad as it felt at the time1
    I am so glad you are confident with going out and can get back to grips with a routine.
    Well done and good luck! xx

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    1. Thank you-it is in many ways like you said of feeling like a new mum all over again. Just with a 2 year old! But if I can crack a newborn, I can crack this :) xx

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  2. From Canada, I'm so glad things are starting to settle down, even slowly. Here's to the next week!

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  3. Glad your getting to grips with the g tube and wriggles is settling with it too. She is looking the picture of health at the moment and I'm sure I could see actual rolls of fat on that earlier post - talk about thunder thighs!!
    I guess it's going to take a while to totally readjust,if as parents we ever fully get used to or come to terms with the impact of frequent and serious hospital but midnight cheese raids aside, wriggles couldn't ask for a better mum, and you work so hard to create good memories and good times so all the other stuff doesn't win and become everything. Here's to good times ;)

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    1. There ARE rolls of fat! It is amazing! I practically can't remember the last time I saw actual fat on her! I cannot see one single rib now. Bloody amazing :D

      To good times! xx

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  4. That is fab to hear,it is amazing how quickly you can get used to these things.
    I didn't care very quickly that I was stopped to put meds down gemma's NG in the street or disconnecting a feed before her music class! X

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  5. I feel like getting you a medal, and a trophy, and a certificate, and a big bar of chocolate, and a jug of tea! Congratulations on completing week one and doing so with flying colours! Really hope you start to get some more sleep soon. xxx

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    1. Thank you so much for your lovely words. I will make a large jug of tea on your behalf and have already had a KitKat chunky today xx

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