Day 29

When I arrived at the hospital this morning it was all good news for Ellie, she does have another nasty infection but the antibiotics have already helped her lungs improve enormously.


X-ray from a couple of days ago, very little air in her lungs.


Todays x-ray the black bits are air.










They were talking of getting her off her sedative, restarting her steroids and extubating her in the next couple of days. In typical Ellie style as soon as the word extubate was mentioned she started mucking up. She had a couple of Ellie episodes, the last one was the largest and they realised that she would need a new ventilation tube. So the decision was made (after heart and head ultrasounds – both were fine) that they would not immediately re-intubate her but give her a chance on NAVA. She went from the ventilator to NAVA  this afternoon without any worries and was looking OK. At 7pm they started a blood transfusion because she was starting to work quite hard and that can sometimes be because babies are anaemic. She only had a 40% chance of not having to be re-intubated and they want to give the best go they can but if she doesn’t improve with this blood transfusion she may be re-intubated by the morning. We are just praying she can hold on without becoming too tired.


Ellie on her NAVA.

Hannah is cruising a bit at the moment, not much is going on with her except that she is getting bigger. She is breathing air through her high flow and is down to its lowest possible settings. Her tummy is still quite big but they are not concerned about it, just watching it closely. She has a little extra tape on this afternoon after spending the morning pulling out her prongs (multiple times) and grabbing her feeding tube.






2 thoughts on “Day 29

  1. For everyone out there who may be struggling with “having a bad day”, we need to take inspiration from Miss Ellie Grace and simply “get on with it”. She is such a fighter – a truly amazing little girl – Deb and Matt, you do realise that she is showing every sign of growing into a feisty, strong willed, stubborn teenager? (Bet you can’t wait) xo


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