Daily treatments

Sophie wakes up or we wake her up!

- Give DNAse via nebuliser (approx 5-7 mins).

- Try and get Sophie to eat some breakfast. Sophie is pancreatic sufficient so currently doesn't need to take any enzymes to help digest her food. This could change at anytime but we carefully monitor this.

- Give first bolus feed (neocate advance) via Sophie's Mic-key button (feeding tube) (approx 15-20 mins)

- One hour after DNAse, start chest physio, attempt to do chest percussion. Sophie has always hated it this but we still perservere every day. Give Sophie her RC Cornet (A form of PEP) to blow in to. 5 Cycles of 10 blows. (approx 30-40 mins).

- Colomycin nebuliser. (approx 10-15 mins).

Lunchtime.

- Attempt to get Sophie to eat some lunch.
- Bolus feed (neocate advance) via Mic-key button. (approx 15-20 mins)

Teatime.

- Offer Sophie food to eat. Bolus feed at this time has now been stopped as part of tube weaning process.

- Wait at least an hour after any food and then start chest physio.

- Saline nebuliser. (approx 10-15 mins).

Attempt to do chest percussion. Give Sophie her RC Cornet (A form of PEP) to blow in to. 5 Cycles of 10 blows. (approx 30-40 mins).


- Colomycin nebuliser. (approx 10-15 mins).

Bedtime.

- Bolus feed (neocate advance) via Mic-key button. (approx 15-20 mins)

And finally before we get into bed (always very late!!)

- 1-2 Sachets of Movicol and 3-5 ml of sodium picosulfate via Mic-key button.

- Final bolus feed (neocate advance) via Mic-key button. (approx 15-20 mins)


This is the bare minimum of daily treatments for Sophie in one day. We try and add in lots of exercise including running around and using her trampoline and bike. Soon to be added-swimming!

This regime also doesn't include extra oral or IV antibiotics which are variable and often unpredictable. Also if Sophie has a chest infection then her physio treatments are increased and are done overnight as needed also.

Sophie has to have her port (Bertie) flushed every 4 weeks and her Mic-key button changed every 3 months.






2 comments:

  1. Gemma I just came across your blog and I've been so moved reading it. I'm a bit lost for words but wanted to say hello.

    I used to walk past the CF centre when I'd take my baby to her Dr. I knew what CF was, and I was always very grateful I could walk past that door into another, but I didn't realise what it actually meant.

    So this blog is such a great idea and I commend you for it and for all that you're doing.

    Sophie is beautiful by the way. But you already knew that.

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  2. I'm sure you've heard of it all by now. But the one thing to always have faith in is GOD, whether you're religious or not and I'm definitely not imposing my faith here. He listens and watches over you. He knows what you're going through.
    Just visiting from voiceBok and the Monday blog hop. Glad you're part of a wonderful network of bloggers.
    have a Great awesOme Day!!! Barbara,
    http://spanishforkids-jbplbarbara.blogspot.com

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