Saturday, September 1

Home Alone

And, so today is the First Real Day of being home alone, with a new tube. Although not that different from an NG, it feels a huge step. You see, the NG felt familiar. Yes it was horrid to be re-passed so often and we got a fair few stares when out and about, but it was what I knew. From NICU and from time and time again during periods of hospitalised illness and the failed plan A, I was fairly good at working and caring for the NG. I knew the pump and gravity feeds, I knew about aspirating and pHs. I knew what number it was passed down to (28) and that there was no point putting a silk (longer term, can be left longer before replacement) one in because they never lasted longer than 3 days against Wriggles' reflux. With the PEG, or G-Tube, we still have the pump, the same feed, the same volume, aspiring to the same pump rate, the same medication, the same port on the tubing line to give medicines, the same routine...but one big difference. It was applied during a surgical procedure, meaning there is a wound; the stoma site. Caring for a surgical wound is not quite the same as taping Hypafix (breathable adhesive) to a cheek. On a scale of hardness to do, it is hardly up there, just takes a bit more time in the day and extra care in keeping things sterile and clean. An infection broke out before we had made it out of hospital so she needs antibiotics twice daily and gauze over it to keeping it (and her clothes!) protected. Still, barely rocket science.

But my goodness it feels draining.

It is because it is the more intrusive physical evidence yet that a) there has been a rocky road and b) that is not going to go away any time soon? (The tube that is and rocky road)

I'm not going to sit here and amateur psycho-analyse my feelings towards tube feeding or anything else. It would be nothing short of dull and do no good at all. Let's just leave it at yes I am mighty glad for possibly the first time since leaving NICU she is receiving a sufficient intake of both fluid, calories and vitamins and minerals, yes I am really relieved that part of the battle is quits now and yes I am over the moon that the risk of aspiration pneumonia is reduced  but also yes, I hate it. It sticks out, it causes my daughter some pain right now and frustrates her because she can't understand why she is too sore to crawl or sit for too long by herself.

Presumably because anything using the core muscles disturbs the g-tube placement and niggles at the site, for the moment Wriggles cannot crawl or sit for long by herself. She can pull to stand and cruise for small periods of time and climb on my sofa, but as she is still weak needs watching like a hawk (3 accidents in half an hour this morning....) and frequently, help. Not that she will ask for it or thank you! I know this is a teething hiccup while her body gets used to everything and stops treating it as a foreign object, and whilst the stomach lining stops trying to pull back away. Still, it is sad to see my happy nutcase loose some independence and confidence literally overnight. Because of the increased vomiting, her feeds are a lot slower than normal so in some ways, it makes things easier, but in others there are not really words to describe seeing your tearaway attached to a feeding pump for right now, anything from 15 hours a day. We have read a lot of books.

By bedtime, Wriggles was finally able to muster some strength through gritted teeth to crawl a bit. Whilst attached to the feeding pump. Understandably she screamed, though as much in reply to me saying "Wriggles, please sit down" to it pulling. Thankfully today, all feeds have stayed down so I am hopeful to slightly increase the timings tomorrow as today there wasn't much longer than an hour between each feed. I'm hoping the antibiotics kick in soon and am looking forward to being able to catch a community nurse on Monday as the stoma is very much oozing and the tape used for the dressing seems to leave Wriggles with angry red marks. Would it be too much to ask for one thing to be straight forward?!

Still, I now feel a bit more confident than I thought I would. I started writing this at lunchtime, feeling like I was being put through a mangle (and a tiny one at that) and only a few hours on feel far more like a human being. Thanks to the fantastic Feeding Tube Awareness and their wealth on information and on-line tutorials and trouble shooting, I have worked out a better way of 'venting' the tube (removing painful trapped wind; minor bonus of having a tube) which causes more frequent vomiting and pain. Some friends dropped by around tea time, and when asked the inevitable "how long is it for?" I managed to neither snap nor cry when I said I didn't know: it could be a year, it could potentially be forever or at least the bulk of childhood. The short answer: however long it needs to be there for. Now we have gone and got it, I am not compromising my child's health or trivialising what may be a "minor" procedure but is rather an major adjustment. I know fully well that neither Wriggles not me will successfully adapt overnight and that because apart from no fluids by mouth, her dietary needs are fluid so will hopefully change as she grows, matures and becomes less aversive.

Who knows, I may even venture out for an adventure tomorrow...  Maybe!


  1. Give it a couple weeks. To me, it is truly so much easier than an NG!

  2. Poor little mite, I guess infection is almost inevitable really when you have a procedure like that done but it must be horrible having to watch wriggles adapt and adjust over these first few weeks. Glad you've found some other families to get
    advice from etc. and hope you and wriggles do venture out today, After all the stress of the last week a nice bit of fresh air will do you both good xx

  3. Well done for even considering going out! So sorry things have been so rough :( ((hugs)) xxx