If you ask me…

Gastrostomies are not the simple solution they are marketed as!!!! Rose kicked hers out tonight!! Her silly mother wasn’t watching what she was doing!! If you asked a nurse or doctor they’d describe the replacement as a simple quick effective procedure that’s performed 100s of times everyday (10s?). It was horrible. Look away kiddies: 20130916-191636.jpg When I took the dressings off her gastrostomy this morning I discovered the granulation her surgical team had told us they hoped wouldn’t happen. So I spent the day waiting for the steroid cream to apply to treat it. 20130916-195437.jpg The cream still hadn’t arrived when I asked a nurse for the 10th time at about 5 tonight and was told the pharmacy was closed and I’d have to wait until morning! Sooo… I lost it. Said quite a few things I feel sheepish about now. Cream turned up soon after tho I feel quite sure my bad behaviour and the arrival if the cream had nothing to do with each other. I was feeling more relaxed about the gastrostomy once the cream was applied and was preparing to turn on her feed when her cross foot caught the tube and the gastrostomy popped out. I so wanted her to have the best chance to have a good gastrostomy and I feel so worried that I’ve ruined that and she will suffer for it. That it’s torn the hole or will leak or become infected. I would say that if you are reading this because you’re considering a gastrostomy for your baby, don’t underestimate how icky and challenging they are and try to learn as much about their care before you’re charged with it and know you’ll be expected to care for it from day 1 and try to get as much expert support as you can to do that. I want to say

don’t get one

but I doubt anyone chooses one when there’s a viable alternative. The pictures below make it look simple and clean but so far it’s oozy and not at all user friendly. 20130916-193952.jpg 20130916-194905.jpg   I found an excellent site for “tubies” about 3 months AFTER Rose’s gastrostomy op. http://www.feedingtubeawareness.org/wp-content/uploads/2015/05/ParentGuide.pdf

I would also like to say…  2 years down the track that I feel 100% comfortable with Rose’s gastrostomy now.  It’s a great one, small and very tight.  No leakage.  I am addicted to feeding her good stuff whenever I want and I’m actually dragging the chain now on weaning her completely… who’d have thunk!!??  This, BTW, is a typical Jane move… freak out, get comfortable, become expert, resist any more change….

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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1 Response to If you ask me…

  1. Bec says:

    on a positive note maybe you could show her that pic the first time she asks to Pierce something? poor bub Is she in much pain from it? one of the things I try to hold on to is that they as yet are too young to remember it.though I cant help thinking it will all play a big part of who they will be. will see you soon heading up in the morning

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