Back to Level 3?

That title probably had you all reading on with concern… it’s a wish not an actuality! We’ve been moved to Level 3 of the Children’s Hospital (C3West) and it’s not what we’re accustomed to!! Great nursing but for older children and babies (particularly those with Rose’s worst enemy at the moment: bronchiolitis) and we’re hidden away in a little room where no one can see Rose… this would all be very reassuring if it meant we were somewhere appropriate and Rose’s issues were resolved but they are not.

I’ve tried a few times to jump up and down about the move but I’m clearly not being very convincing… maybe the fact I haven’t had a shower for 3 days now is creating the wrong impression?

Anyway – we had our first demonstration of what google promised of the fundoplication yesterday… I was told to clean around her gastrostomy site but the Gastrostomy Nurse said to give her panadol if it caused her discomfort as it’d set up a negative association if she could feel pain. So we gave her panadol, waited for it to work and then I tried to clean it and she was very upset so started crying… crying causes abdominal pain when you have a fundo (ref. google and now my own experience)…. so she cried more because she had abdominal pain which caused her to cry more… so we had to vent her (let the build up of gas out thru her gastrostomy tube) but none of the nurses assigned to her on CICU knew how to do this so they found one who did and we vented her but by then the crying and the venting was a circle that may never resolve so we stopped venting her and gave her stronger pain relief… so that was all just a bit nerve wracking and very confronting. I have spent the time since then berating myself for not being stronger and saying no to the fundo. and being quite scared of her in her new surgically modified form. Not useful I know but unavoidable so far. I know all the reassuring things you guys are thinking but at the moment they’re not helpful.. at the moment I just hate now and you’ll have to let me.

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About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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4 Responses to Back to Level 3?

  1. San says:

    Jesus love, this sounds just plain awful. I wonder how much more you all have to go through. For the first time since Rose has been born, I feel anger for you at a system that is keen to suggest and perform surgeries but not there to support on the other side.

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  2. Kate says:

    I hate now in support of your hate. Love and support. Kate

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  3. Jane W says:

    Sounds absolutely horrible Jane. Totally supporting you in hating now. Cannot stop thinking of you. big hugs x

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  4. Caroline Parsons says:

    I just went back and reread this post. Hate hon. Hate everyone. Be angry, feel everything you want to feel. Please don’t try and control yourself or be perfect. You’re going through hell. If you didn’t feel frustrated and angry and guilty and hatey and a little bit insane you wouldn’t be human. I love you no matter what.

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