Week #14

Hello! How are you? I'm still in hospital but doing ok so it's alllllll good. I'm able to leave my room now so my mama wheeled me down to the cafe for important supplies: 

This week has gone pretty fast actually, even though I'm stuck in hospital I've actually been kind of busy and I'm so knackered now, this is my routine:

5am: Do a nebuliser and some chest physio (these are breathing exercises called autogenic drainage that help me cough up the nastiness in my lungs) 

5:30am: Back to sleep

6am: Nurse comes and does first two ivs, so now I'll be on a drip until about 9am

8:30am: Do 3x nebulisers (nebs), tablets and more physio 

9:30am: Get dressed and ready, then squeeze in an episode of House Of Cards!

11:30am: Physio comes and we do percussion, which is basically her hitting me over my chest and back to literally  beat the stuff off my lungs! Not the most comfortable thing but it doesn't hurt. While she's doing this I'll do deep breathing or use a machine called the bird. It forces air down my lungs to help expand them so I can take a deeper breath in and do physio more effectively, it's great at shifting the really sticky stuff at the bottom of my lungs. So I take a deep breath in and a big blow out which is tough because as I blow out it's still trying to force air in, I guess it's a bit like when you're trying to walk against the wind!

      The Bird! 

12pm: IVs time so back on the drip!

12:30pm: Lunch time, then I have a nap.

1:45pm: 2 more nebs 

2pm: Another IV drip 

2:30pm: The physio comes back and we basically repeat what we did earlier. 

4pm: Mama is here! And other people come to visit too in the evenings. 

5pm: Dinner time

6pm: IV time

7pm: 3x Nebs and tablets 

8pm: The on call physio arrives and we repeat what we did earlier, she's here until about 9pm.

9pm: Start overnight feed, this finishes about 10am the next day. 

10pm: Mama goes home and I'm back on an IV drip

11pm: I do some physio and go to sleep, IVs finishes about half past midnight so finally the light can go off! 

 And in between all that I've seen various doctors, my CF team and healthcare assistants come in to check my blood pressure etc. And I'm on my Optiflow the whole time (humidified oxygen that is also delivered at a higher flow, basically gives me a bit more oomph compared to my usual stuff!)  

My physio said the physio I do with the bird and everything is the equivalent of someone running a 10k, I'm not sure how accurate that is but I do know it's tiring! But I'm lucky to have such a good team of medical staff and also family and friends all helping me get better so I can go out on my birthday (which is this Friday, eep!) 

Sorry if this was a rambly, boring post - just thought I'd tell you what a hospital stay is like for me! The treatment regime is pretty much what I've been doing every day at home for the past year and a bit except without the bird and I'm not always on IVs. A lot of people ask me what I do all day and this takes up a huge amount of time! I'm not quite the lady of leisure people assume I am ;)

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