Day 196

Today Deb and I had the task of making the decision if we would allow the doctors to give Ellie a tracheostomy as per their recommendation. This was not an easy decision to make for many reasons, some major ones being:

  • It is a long term solution (2-4 years in many cases)
  • She will not be able to speak, cry or make noise during this time
  • Feeding will also be very difficult
  • There is a lot to learn and do to maintain and look after this kind of thing
  • Post-surgery Ellie will be very weak and vulnerable to infection, they expect babies to take some very big steps backwards after a surgery like this

As much as we hate the idea of taking away Ellie’s voice and having a permanent hole in her neck, it was also near impossible to come up with any good reasons to go against the advice of the professionals, who clearly have Ellie’s health in their priorities.

As always things never move quickly when dealing with so many surgeons and specialists, and we expect a new surgery to be booked in 1 weeks time at the very earliest. (She will get 2 hernias and a tracheostomy done at the same time). We are very hopeful that this can be a big step forward to bringing Ellie home.

On a more positive note, the boys are very excited about learning a special infant version of sign language and already have a few words memorised.

Ellie looked the best she has been for a while today and she seemed quite please to have her sister and brothers all visit today.

*Matt

 

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2 thoughts on “Day 196

  1. Wow what a difficult decision to make…alas you’ve done all the right things and made all the right calls so far so I’m sure this is what’s best. Still not easy tho. Sending love and light to all of you x

    Liked by 1 person

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