Oxygen.

Isaac is now on oxygen. His saturations have dropped at worse to 79, but most the time hover around 88-92, and this is with 3 litres of oxygen supplementation. Ideally he should be at 94 or above on just air. Anything below 92 is a worry. He hates it. He needs humidified O2 to keep his mucous moist so he can cough it up, but this means a mask, and warm wet air. At night we struggle; he falls asleep and pulls off the mask. The alarm goes off. I wake and put it back on. He curses at me. We fall asleep. And repeat. This, along with a ward full of people and machines and endless beeping, equals very little sleep. He has been on O2 24 hours now, and still no sign of improving enough to come off it. 

I have wanted to cry a thousand times. But I only have twice. OK, maybe three. Part of my role here is to be the one he lashes out at when things are this bad. He is polite with the nurses, and for that I am proud. (NB; that is not to say I let him walk all over me, or that he often lashes out, but just that I understand that things are so frustrating for him, it is him going through this, not me, and I am his safe place, so it's a kind of back handed compliment). 

I've stood by the nurses station as 8 or more staff walk around me, me like a mute rabbit in headlights, they avoid all eye contact, all going about their work around me, but never actually acknowledging that I am there. All I need is a sick bowl - but everyone is too busy. I do every thing I possibly can to not take up any more of their time, but the damn sick bowls are in the sluice, locked away from me. The care, when they have the time, is faultless, they just don't have the resource to give the time and care they want to. This is the real state of our NHS. 

The good news from today is that we have a plan; He can drop the nebulised hypertonic saline, as he is coughing too much (I'm quite surprised he didn't produce a whole lung). But double up the DNAse, which helps thin his mucous. Thankfully a chest X-ray ruled out any pneumothorax (collapsed lung). So we can increase the physio, but not at the gym (he is not well enough to leave the ward now)  we'll go back to chest percussion and something called the Bird, which is a big retro looking machine that pushes air into his lungs. We will continue with the IV drugs he is on, awaiting lab results which may show something new, until then, we assume it's a flare up of his usual Pseudo infection. 

Tomorrow will be better. It must be. To all who have called, helped with the girls, sent food or love.... THANK YOU. x 

The 'Bird'.