First day at home

7 Jan

Coming home on Thursday night, laden down with equipment and instructions, I felt like we were bringing home a newborn again. Completely out of my depth and scared as hell.

We’ve had a few hiccups, like any good first time parents. Before each feed or administering of medication, we need to check whether the tube is still in the right place. To do that, we have to draw some fluid out with a syringe and test it’s ph levels. If it is above 5, it means it may not be in the right place so we have to give some water, wait a little bit, walk Tilda around and then try again.

Our first attempt at home, the ph level was 7. We called the truly wonderful nurses who talked us through the next steps. We called back when the next attempt was still at 7. They sent round the extremely lovely Elaine. Elaine does it and the ph level comes out a perfect 3. How do nurses do that?? She was very kind and understanding. We felt a little silly. But so glad we have these wonderful people to call.
Thursday night, Tilda had a fever. We gave her panadol (very handy through the tube) and she went back to sleep. All day yesterday though she was pretty lethargic and not her usual cheery self. We had a visit from the nurse from Hospital at Home who will come out to see her every second day and were advised to wait it out and if she develops another fever then we should take her back to hospital. Thankfully, there has been no signs of any further fevers so I think she is ok.
We haven’t quite got a good rhythm yet with this new set up. We are still feeding her orally so meals now take twice as long and it seems like just as we get done with one meal, it is time to start preparing the next. Because of that, we have also been a bit housebound and Tilda is watching lots of tv. I am hoping that we will get into the swing of it all soon and that our days can be filled with things other than tube feeding.



6 Responses to “First day at home”

  1. Amber January 7, 2012 at 8:15 pm #

    Zoe: ‘Why are you sad Mummy?’ Amber: ‘Because little Tilda is having a bit of a hard time at the moment.’ Zoe: ‘Remember rollercoasters make Tilda very happy Mummy.’ xxx

  2. Diane January 8, 2012 at 8:20 am #

    What can I do to help?

  3. Juliet January 8, 2012 at 12:01 pm #

    My heart goes out to you all and I hope that the feeding settles down soon and you are able to enjoy the summer!

  4. Cally January 8, 2012 at 7:45 pm #

    You are all terrific.
    To have mastered the ph level of stomach contents and eveything else is amazing.
    Even old nurses struggle getting it right.
    More power to you all.

    The lovely photo shows Tilda looking gorgeous and happy.
    Lots of things are good.

    Warm hugs to you all.
    Give Tilda a hug from me.

    Love Cally xx

  5. Kym January 9, 2012 at 12:51 am #

    Medical stuff always seems so daunting as it all seems so technical when your in hospital having it done to you by an expert. I would be exactly the same Laura wondering whether I could get it right and working without help. It sounds like you have got it done though, and in the photo she seems all ready to go. I wish I was there to bring over coffee and a chat. I reckon I could make you laugh with the latest antics up here in the Nt. Hope the day ended well and Matilda is all tucked up and asleep.

  6. Irene Davey January 9, 2012 at 2:32 pm #

    That would be right… Our Laura being all left handed or whatever the saying is…Anyway lovvy, here is the hug or two you are missing OOOOOOOOOOooooooooooooooooOOOOOOOOOOOOOOO and a big wishing you all a happy happy wishy wishy 2012. Looking forward to seeing you back here 🙂

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