High tech care.

We are still in PICU (Paediatric intensive care unit) and Isaac is having help with his breathing. This sounds more invasive that it actually is though; he is still breathing for himself, this just helps by increasing the flow and the oxygen to his lungs so he doesn't have to work so hard. He still needs a whacking amount of O2, between 15 and 20 litres. To put this into perspective, he was on just 3 litres to begin with. The hope now is to gradually decrease this, but for his sats to remain high. This may take a few days, and attempts to lower it today have failed. He is on some new treatments, and is having lots more physio (using a device called a Bird, which helps force his airways open by giving him high dose O2 under increased pressure). The best news is that he is sleeping better at last, and is a lot more comfortable. This is our spot in PICU; 

Despite everything, Isaac thanks everyone that comes to treat him. He can't leave his bed area, so has accepted things like bed baths, commodes and pee pots without complaint. Whereas a few days ago (sorry, I really can't remember what day it is now, what happened when, or my own name anymore) he was battling with us; pulling off his O2 all the time, and finding physio so hard he didn't want to even try, he now actively wants physio, to help shift the gunk on his chest, and becomes distressed without O2 even for a short time. He desperately wants to feel better. He has also wanted both Dan and I to be here with him, which he's never asked for before. It's not PICU that has been scary for him (it's so reassuring to be up here, in this super high tech environment, with amazingly calm one to one nursing care) - but the breathlessness and gasping for air has been traumatic beyond words. 

There are no beds for parents on PICU like we have on the ward. After a few hours here last night they bought me this chair; 

Which is THE MOST COMFORTABLE CHAIR EVER - a fully reclining piece of medical-blue faux leather sumptuousness of great splendour and magnificence, like a bed of roses for a tired and worried parent. I may have cried a little. 

We also have access to a house on site here - managed by the Sick Children's Trust, and run by volunteers. While Dan is here I've been able to go over there for a nap. Again, I may have cried. A few days ago I felt kind of numb, emotionally deadened. Unable to process everything that was happening so suddenly. But today I pass a wee baby on PICU every time I go to the loo, and this has me in floods every time. Isaac is nearly my size now, but in my mind, he will forever be like this. 

He is asleep again now, and this is the best thing for him. He is being an absolute hero. I can't tell you how proud we are, or how much we love him. As we have told him a hundred times, he is not alone in this, we are a team, and CF can do one! 

Thanks so much for all the love, messages, and to everyone helping with Anouk and Rosa, as this is scary for them too. As always, knowing they are happy means we can concentrate on looking after Isaac, so this means the world to us x