Day + 4 Nothing new!

Today was pretty much the same as the past couple of days for Orla. Sleeping, a couple of salt baths, TV, music therapist, singing, playing with her balls, more TV, story books and generally messing about, pulling and attempting to eat her nasogastric and IV lines…..etc etc!! She even buzzed the nurse looking after her this morning when she woke up from her nap, I was out of the room, all by herself…..!!!

The stomal therapist came to see her by my request this morning as the new bum regime wasn’t working too well namely because it was sticking her cheeks together!  We now have another regime which combines all the regimes used to date and should protect Orla. We are however fighting a losing battle as her neutrophils are heading to zero now thus she is almost at her most vulnerable from an infection perspective.

The doctors remain comfortable with her progress. The ward has become very busy over the past couple of days with some very sick children moving in. The nurses are very busy and we are not receiving a great deal of attention because Orla is very well in comparison, we are definitely not complaining!

She is to have another dose of Folinic Acid tonight and then the steroids should be stopped tomorrow!

8 thoughts on “Day + 4 Nothing new!

  1. With everything she’s enduring it’s hard to believe there are kids that need the nurses attention more! Her poor little bottom!!! Your all doing an amazing job, we’re thinking of you all the time! Will chat soon, love to you all, XXXOOO.

  2. So sorry that Orla’s little bum is not improved. It is hard for all of you. Thanks for the daily updates Flick, sometimes I think i am outside the window peeping in. Hugs to you 3 Carmel and George

  3. Well done Flick and Edward we are all thinking of you good that you can all keep orla fairly comfortable every new day should bring some more hope wishing you all the very best

  4. I hope Orla’s little bot is on the improve today. Thanks so very much for your posts, we send our love in abundance & cuddles from the crew x

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