At last. Two weeks in hospital feels like 3 years 4 months and 29 days when you are there. I was kind of hoping to get out and find that the whole Brexit/Trump thing was a whole Dallas type dream, Bobby would wake up in the shower again and none of it would have happened.... no? Hell.
Isaac has gained 15% lung function compared to admission, which is good, no.... it's great, but not quite as high as we would all like it. I am so thankful for his excellent CF team who like us won't settle for less. If we can get him better, we will! Therefore we are planning a third week of IVs, which is unusual, but may help his LF further. But I'll do these at home, which is so much closer to a normal family life. So we loaded the car with our many many bags, meds and equipment, and escaped. If his longline fails sooner we will rethink (I will post soon to better explain cannulas, long lines, and PICC lines, all of which he has at times, as I realise it is very confusing)
The fresh night air was exhilarating, played the music so loud and sped home to be a family again, smiling all the way. Talking to another CF parent earlier who is in the same situation right now, about how you get home, and it's amazing, and you celebrate...... but unlike many other people leaving hospital, it's not over, it's never over for us. And so it's often when you get home that you crumble, after holding it together inside so well. I am not yet crumble. I am still smiling, but soon....
Huge thank you's to the Grandparents as always, coming to our rescue. We can never thank you enough. The Cayley's for always being there, Bronté for always visiting, Lautaro, Ju and Jess (so great to see you guys), Lemon, Lizzie, Gem, Jin, Hamish, James, Bon, Sarah, Gavin and Jennifer and many others for the soup, the wifi, the help, the kind words.... it really does mean the world to me, and helps Isaac pass the time.
And to the amazing staff on D2, nurses, our unsung heroes x
