Monday, 29 October 2012

Day 1: Tube wean.


Just a quick blog for update purposes and apologies as I'm doing it from my phone as it is the only way I can get any signal.

Sophie has settled into hospital really well. She woke with excitement today and couldn't wait to get to the hospital which is very rare.

After packing up half the house we set off to start the main adventure.

We started tube milk reduction yesterday and cut 2 feeds down from 260ml to 160ml each and 1 feed from 150ml to 100ml.

Today the reduction continued and she is now only having 2 feeds of 60ml via her tube. By tomorrow she will be down to no tube feeds.

On arrival at the hospital we were met by all three of sophs psychologists who she was very pleased to see. Within about 5 minutes she was taken straight down to her first therapy session.

Height on admission is: 106.7cm
Weight on admission is: 16.5kg

Think they are planning to weigh her at the end of this week but details to be arranged.

Soph has reacted well to her therapy already. She's managed to make/decorate some cakes which she gave to the nurses.

For lunch she managed half a large can of soup with full fat cream added and ate this in less than 9 minutes which is awesome!!!

She also managed to drink her mid afternoon paediasure in less than 10 minutes.

Some evidence of hunger is showing though, Sophie is becoming a little short tempered but the psychologists are pleased as they can work with her better when she shows her emotions.

Day 1 has been quite busy for her.

Things became a little more trying at tea time but will blog about that tomorrow when I can find a more reliable signal for laptop.

Best update/log I can do for today!

X

Wednesday, 24 October 2012

A new era?



We are entering a huge milestone. No one can be certain how this next set of events will unfold, but we have hope. Hope that a massive leap, a gentle push and lots of persuasion will leave Sophie looking back on a time in her life that will become a distant blur. Part of the past.








Next week Sophie is being admitted into hospital for nearly two weeks. A common occurrence in the CF world but this admission is nothing to do with CF. This is all about the TOF!

This admission is a collaboration of nearly five years work. Five years of tears, heartache, operations, difference of opinions and stress.

We all collectively feel that the time is right, Sophie is finally ready, we are all finally ready.

Sophie is having an inpatient tube wean.

This means that we will slowly decrease her milk via her gastrostomy over a few days until she receives no nutrition artificially. During this time she will have a team of expert psychologist who specialise in oral aversion.
This isn't something commonly done in the UK and we do feel very privileged to have this help. The aim is to get Sophie taking all of her nutritional needs orally. Something that she hasn't done since she was 4 months old.
The program is huge and I aim to blog as much as I can during the process.

It's an unsettling time as we do not know how Sophie will respond to the treatment. The program uses 3 different types of psychology and I believe this hasn't been done too often.

It has been a mammoth task to organise and Sophie's CF team are fully on board to monitor the health aspect if needed. We cant allow her to lose too much weight as this will compromise her chest.

I'm extremely excited, nervous, and apprehensive but it's been a long time coming and I just have to hope that this intervention is going to work.

We need Sophie to become an eater.









Although Sophie does take small bites of food, a lot of the time she spits it out. This is where we need her to move on. She has 1000 calories per day via her gastrostomy, soon to be reduced to 0.











Hopefully we will be seeing more pictures like the one above and once the food enters her mouth she will swallow it and actually eat (hopefully!)



This has been one hell of a long journey and now we enter the final phase I hope you will be as curious as us to see how well Sophie does.

I'm immensely proud of how far Sophie has progressed over the last 5 years and I know she will overcome this final hurdle. It isn't going to be plain sailing and I know there will be more tears but we have to try :)










See you all on the other side!
x





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