Onwards and upwards? (maybe sidewards 🤔) 

I’m doing well,  off the oxygen, except at night.    It’s all a little surreal though.  I can now breathe without oxygen which is great, so much so they turn the monitors off,  this makes Stephen edgy.  The explain it’s because patients become too medicalised and everyone becomes too fixated on numbers so when the patient is stable, the monitors go off.  I’m moving about more but still feel like my lung is stuck to my diaphragm so when I stand up, I get pain and lots of it.  The TPN is up and running and I’m having small drinks of water.  But of course the reason I came in in the first place was to fix the fistula – that has spectacularly failed.  So yes I’m doing well as far as my lungs go but it’s back to square one on the bowel.  My Consultant meets us on the ward today for a chat.  He admits he is devastated and for him it was a real ‘head in hands’ moment.  He did stress how the lung thing was very serious and we could have  been looking at a very different picture today.  He said he is totally committed to getting me well and I believe him.

Unfortunately there is little that can be done to progress things – bowel rest, good nutrients, sleep, exercise – all covered.  He won’t do a scan until things are more settled so it’s a ‘watch and wait’ situation which is quite frustrating for all of us.  

Talk of return to the ward has been mentioned,  this makes us both nervous.  Dont get me wrong it’s a specialised ward but it’s not ICU/ HDU.  The ward is busy with a lot of bank nurses at night, some of whom are worrying.  I remember a few days after my second op,  on that awful week when I was making deals with God to give me a drink and just take me.    I had a bank nurse looking after me.  She was hopeless and when I asked her to rub my back as I was so uncomfortable,  she looked blank at me saying she didn’t understand.  But I have been reassured that I am now will be carefully monitored which means any problems have to be referred to the outreach team.  These are the amazing people who saved my life on that Thursday when my lung stopped.  Specialist highly skilled nurses who are just amazing.  They have been back and fore a few times to see me and I will be eternally grateful.  

So it’s a case of waiting for a bed on the ward and I’ll be off.  My days continue to be filled with sleep, little walks, rest and more rest.  The exhaustion is overwhelming.  A short walk leaves me slightly breathless,  I cant walk and talk at the same time.  If I bend to wash my legs I feel as if I’m going to pass out.  I sit down and am too weak to stand up.  Despite the fact surgery has been part of my life  for so long, I have never experienced such a total feeling of wipe out.  I’m looking for meditation apps to help me relax.

Just so happy to be alive but also afraid at where that awful infection or whatever happened took me.   I dont ever want to feel that Ill again.

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