Tube feed dramas & Christmas begins! | A Day in the life Chronically ill edition

[@ScratchyBaws]

Oh that Nebulizer bit brought back some memories from 20+yrs ago when i used to care for my Nephew who has severe Cerebral Palsy, he would rock back 'n' forth on his knees on the floor nodding his head in excitement waiting for the mist to come through the face mask. Also loved the bit with your daughter as reminded me of my sister or nurse showing me how to get my Nephews meds prepared. It actually hit me this video but in a lovely way and will wish you and your lovely family there a wonderful Christmas and a happy new year. Thanks for sharing J...🤗

[@CraigC20]

Amazing video has always Jet, lovely to see kira has been down and the kids decorating the tree, hopefully it survives haggis 😂, an that advent calendar looks amazing!! Much love to all 💚🖤 you got this bestie

[@Inbetweentwolungs]

Thanks Craig! Hopefully this am well coming will have more excitement, less medical! But we shall see, what will be will be 😅

[@CraigC20]

@ only positive vibes, we’ve all got everything crossed, but there hasn’t been a mountain you’ve not overcome ❤️ here is to everything this years Christmas been aswell as can be and out with the boys xx

[@AdzHunts]

It’s great that you keep smiling. You have a load to cope with. Proud of you x

[@Inbetweentwolungs]

Couldn’t do it without you!❤

[@annemariefurlong5048]

Sending you lots of love and healing from the Emerald Isle .. happy crimbo 🎄🎁🎁💝💝🎅🇮🇪

[@Inbetweentwolungs]

Thank you Anne Marie! And yourself have a good one! ❤

[@annemariefurlong5048]

@ your a true legend keep up the videos and that beautiful smile ..💝💝🎁🇮🇪

[@franny5295]

If you can get a bipap with nasal pillows, that might make you feel much, much better. The only caveat is that because your lung function is so poor, there's a possibility that being on it may make taking it off feel...unbearable... so, definitely something to keep in mind. Just, don't let it become a cascade of intervention thing because if you end up with a trach, you'll be stuck with it until you get new lungs. You get the coughing fits to puking too? Jeez, that's a bummer. I hope you feel better.

[@Inbetweentwolungs]

@@franny5295 we’ve been down the NIV track and they refuse to fund it in my hospital for cf patients. Despite another hospital where I had a second option, suggesting it would be good. So it’s not an option even if it was worth while unfortunately

[@Inbetweentwolungs]

@@franny5295 puking coughing fits are very much the norm daily! I’d be more surprised if I didn’t these days 🤣