Home....what's that again ?

I will start with Wednesday. I was so excited to be going home on the Thursday I couldn't sleep all night I think I eventually got to sleep at 2 or 3am. Everything was all organised and set to go I had switched over onto my regular IVs of Mero and Tobi and had had no temps so home was on the cards for Thursday. thursday morning came and I will admit I felt a bit rough in the morning just the usual sickness and a bit breathless but I mean come on I do need new lungs so I thought no big deal this is not stopping me going home. So about lunchtime my sister arrives and we didn't need to wait on a prescription as my mum had it all at home so we packed up the last of my stuff and off we went home at last.

I love a car journey somehow it always relaxes me I don't know why, it doesn't take us long to get home half an hour. Once we got home the family start arriving just how I like it. We had a great night and I decided to treat everyone to a dominos which was just amazing. After everyone left me and mum decided to get an early night so we headed up to bed this is a task itself with mum having to carry the heavy NIV machine while I get to enjoy the stairlift ! I settled in my own bed and was out like a light.

I woke a few times during the night feeling very sick and shivering even though it was like 100 degrees in my room. The whole night I tossed and turned couldn't get comfy, I was also really tight and breathless. By morning my temp was high and my sister checked my sats on our own machine at home and the were reading 60-70 % so she phoned my mum at her work to tell her and she decided it was time to phone the hospital. The CF team said to phone an ambulance and to get me here as soon as they could.

My mum came home from work and packed a bag then the ambulance arrived, by this point I was really struggling to breathe I couldn't even get out of my bed so we numbed the oxygen up to 10 ltrs through the NIV it's usually at 4-6, this really helped. It felt like that heavy brick that had been pressing down hard on my chest had been lifted. I stabled out in the ambulance and once we got to gartnavel hospital my says were back up to low 90s. So I was admitted again and started onto my back-up IVs.

Saturday was a rough day again with high temps and really breathless so paracetamol, a few doses of oramorph and a lot of sleep helped me through the day. By dinner time I had perked up though and was feeling better.

Today I was totally gutted as I missed a family get together for my cousin Ruby's first birthday I hate missing family events nothing makes me happier than being surrounded by them  and all the children in our family. I did however get a visit from my sister her boyfriend and my nephew Oliver. The brought me cake from the party so that made me smile.

I feel really gutted to be back here after only getting one night at home and I sometimes wonder what I have done to deserve this. I am the type of person who when you ask so how are you Chloe ? I always just say I'm fine with a smile on my face but that smile is hiding alot. Honestly I'm scared no I'm terrified I'm needing stronger and stronger IVs each time I come in, I'm hardly getting any time at home either. I am in desperate need of new lungs I not stupid. My mind has a huge imagination I wish it didn't but it tends to wonder making up horrible scenarios. I have a great way of dealing and coping with these hard times and that is seeing Oliver my amazing nephew he has a smile that just lights up my whole world. When he looks at me with those big eyes my heart sinks, if I'm breathless and he arrives for a visit I can instantly breathe like I have had my transplant. Last year when I was really not well and we didn't know what was going to happen my sister was still pregnant with Oliver, he doesn't know it but I know he was what made me keep going because I knew I couldn't let him down I couldn't have him coming into this world not knowing who his auntie Chloe was. So like I said I'm terrified just now but all I need to do is think of Oliver and how I need to be here for him.

It's quite late now so going to stop this one here I know I will get home again soon hopefully not to long I love all the staff here they make my stay so easy and comfortable but nothing beats your own home right ?