Day 208

At the risk of sounding optimistic….Ellie looked really good today!

Her nurse had given her a bath before I arrived and Ellie did really well during it…..without her mask on! (which is a big deal for Ellie). She was very alert and interactive when I arrived and also had a few very peaceful baby naps.

I had a couple of chats with consultants and doctors who all mentioned how they are pleasantly surprised with how well she has settled in the last couple of days. They both also mentioned that a Tracheostomy is moving further back in their minds and is no longer a big definite reality as it was when we were getting ready to move hospitals a week ago. It is hard to get our hopes up knowing how quickly things can change with Ellie, but she is doing the best she can to be an answer to prayers and to prove doctors wrong.

The most current plan now is to postpone all surgeries (including hernia) and to cheer her on for as long as she keeps growing and improving. It feels weird writing that but it is very much the words of the two doctors who spoke with me today. (it was only 2 days ago an ENT visited to assess her suitability for a Tracheostomy).

So Ellie is making the most of her ‘last chance’ to get better and avoid surgery. Thank you to those who are joining us in praying for this little warrior and also thank you to those who continue to support and carry us through this. Even if Ellie pulls off this miracle it is going to be a long journey ahead.

I finished my visit by having some floor time with Ellie. The nurse decided she would be fine on Low Flow (2 steps down in breathing support) and Ellie lasted on this for a whole hour! She loved the freedom and had a good whinge when her mask was put back on (not a cry, but several ‘waah’ sounds…which she won’t be able to do if she gets a trachy…maybe Ellie’s way of telling us she is doing her best to avoid it).

*Matt

 

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5 thoughts on “Day 208

  1. First of all, Deb, you are actually allowed to sound optimistic. The very sound of optimism is music to all our ears. Miss Ellie, 3 days ago I suggested to you that you had a whole new hospital ward to impress with your battle skills – seems you like it when anyone throws down a gauntlet. If the plan is to “cheer you on as long as you keep growing and improving” then…
    YaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaY Ellie!!!!! xo

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  2. Well done Ellie!! You are doing brilliantly! Keep proving everyone wrong, like you are so great at doing! Lovely to hear you are settling in to your new home. Debs and Matt I know you have been told many times but you truly are amazing x

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  3. Well done Ellie, you truly are a Warrior Princess….and you Mum and Dad are the best. Lets all start feeling optimistic and cheering you on. YOU GO GIRL! xxxxxxxxx

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