Sophiesmum
New member
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.
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
This post does contain pics, to view them visit http://lungsbehavingbadly.blogspot.co.uk/2012/10/a-new-era.html
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.
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