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Ellies Fight

  • Off the Ventilator

      4 August 2013

    Ellie has worked all week very hard to get to this point where she is now off the ventilator and breathing on her own!! She did 3 days on the sweedish nose which is basically an attatchment to the end of her stent and she has been breathing room air. Has a small wheeze at times throughout the daybut it goes away. Ellie has done so amazingly well in the past 2 weeks, and has definitely defied the odds here at starship, where they didn't think Ellie would make it, (several times). We have got one small hurdle to overcome, Ellie has had a bulging Fontanele, which has gone down a little bit now, and has had a Cranial Ultrasound through the fontanele, which showed a small bleed. They are keeping an eye on her head circumference and an MRI has been booked for the 13th august.

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  • Extubation Attempt

      20 July 2013

    Yesterday 19/07/2013 Ellies doctors and Nurses Had a go at Extubation. Because of her previous Coanil Artresia repair the ENT surgeons want a stent kept in her nose. The ventilation tube was pulled out enough to be kept as a stent. To start with Ellie did so well and had excellent saturations. She was on a C-PAP setting but it wasn't delivering enough pressure. The end of the tube was sitting right on her throat making it very uncomfortable for her. Aside from that Ellie went on a gradual decline and her oxygen saturations dropped to about 75% and she started getting tired and had work of breathing. The best option was to Re-intubate. So now Ellie has the tube back in and is back on the ventilation machine. They will let her have a quiet restful weekend and continue steroids and then try again on Monday to extubate and put her on a different machine that delivers the right pressure whilst she has the Stent in.

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  • Has Ellie got the fight in her???? Can she beat the ODDS

      13 July 2013

    Ellie has hit a hurdle where shes not getting better and weaning down on the ventilation makes her CO2 levels go dangerously high, She doesn't have very good gas exchange, but in fact never has and her lungs are still very stiff. Today a 12 day course of steroids has been started to try and help Ellie's lungs to soften enough so that the doctors can turn down the ventilation and hopefully extubate the tube. This is almost like a last chance option So we all need to pray for Ellie and send healing thoughts and positive energy to her here in the PICU ward in STARSHIP.

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  • Recent procedures

      12 July 2013

    On the Tuesday 2nd of July Ellie had her Coanal Artresia repair done in her nose, this was to open up her nasal passage as it was blocked. The ventilation tube was also inserted into that left side where the repair was done to double as a stent and to be in a more secure place On the Friday 5th of July Ellie went to surgery again and had another dose on Anesthetic, this time was to have a Nissan Fundoplication In her Stomach, This is where a small piece of Ellies tummy was wrapped around the bottom of her oesophagus to try to reduce the amount of fluid reflux returning back up the pipe and help to try stop aspiration. Also Ellie had a Gastrostomy peg inserted in her Tummy, or another name for it is a Mic-Key button. This is surgically placed in her tummy as another way to feed into her tummy rather than having a feeding tube down through her nose and into her tummy.

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  • Update for 04/07/2013

      4 July 2013

    Today Ellie had Barium Swallow test to ensure that her insides don't leak and make sure the stomach works properly in Preparation for tomorrows surgery. Ellie is getting a Gastrostomy button and a Fundoplication to stop Reflux, Watch this space

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