Day 149 – part two

When we left off I was hastily trying to send the blog before out parade headed down to radiology. Ellie went down on CPAP in her big transport trolley, the porter was pushing her, two nurses were watching her and the fellow was leading us all. In radiology the consultant met up with us all and one nurse returned to the nursery. Needless to say no one really trusted Ellie on this trip. It was my job to carry the plastic bag of medical supplies needed to intubate her. I’m convinced if there weren’t that many people watching out for her she would have misbehaved, but she was a very good little girl. She had to be held down a little bit (I was allowed to help with this and chat to her while it was happening) and she cried but still a very good girl – the sedatives she had gotten that morning may have just taken the edge off slightly.

She transport crib was pushed back to the nursery by a consultant, a fellow and a nurse – the most overpaid porters in the hospital!

Her trip was a success they got her special feeding tube in that goes past her stomach (as an aim to stop her vomiting) and saw on a contrast study that the reasons for her vomiting are most likely reflux. There is talk about helping her with her reflux via surgery – there are still lots of discussions. If this is the case she will have to be re-intubated, the plus side is they will be able to fix her hernia’s at the same time.

Ellie was exhausted by the handling and being back on CPAP for over an hour and there was quite a bit of crying and breath holding when they first put her in the transport crib (yep that’s right my first kid to be a breath holder and it’s the one with the crap lungs), I just rang and it seems she has recovered nicely. Her NAVA level started at 2.0 yesterday afternoon, was reduced to 1.5 fairly quickly, was 1.2 when I arrived this morning, back up to 1.5 after radiology and is at 1.0 now. Which really means nothing to all of us but shows she is slowly recovering.

Her work of breathing has been dramatically reduced by the NAVA. They suspect she needs the extra support at the moment due to the milk in her lungs and a possible bout of pneumonia. She will stay on antibiotics for 5 days and hopefully recover quickly.

The best news to come out of today, she is allowed to have milk again!! She will be on continuous feeds due to her special feeding tube and is currently allowed to have 2mls every hour. This will increase by 1ml every 6hrs – so not to far off her original 25mls per hour she was on two days ago.



A surprise by Ellie’s bed when I came back from Radiology.


It felt like a real blessing to be able to share something with the amazing staff.


Ellie exhausted after her big trip.


4 thoughts on “Day 149 – part two

  1. Aw Deb, you put a smile on my face with your description of Ellie’s road train – “overpaid porters” indeed! As for her being a breath holder – I did recently predict that she was showing all the signs of being a champion supermarket whammy chucker, did I not?
    Glad they got the new feeding tube installed and yay that she gets to have milk again – pity she doesn’t get one of those exquisite cupcakes – what a work of art – bet the staff loved them (but not as much as they love Miss E). Time for more of that onward and upward, Ellie!
    Hope all the Humphreys, big and small, get a good night’s sleep and have a wonderful Saturday xo

    Liked by 1 person

  2. I couldn’t help but laugh out loud at your comments about the breath holding, my first thought was “that’s soooo Ellie”. I love to check in with your blog each night and every day I pause and take a moment to ask for the universe to keep sending Ellie (and indeed your whole family) strength and blessings to battle on with her journey. I have no doubt that she will continue to battle on, there’s some very special and important role she is sure to play in this life and nothing will stop her from achieving that. Love to you all xx

    Liked by 1 person

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