Queen Firstly, you need to talk to somebody. You are going through such a stressful time and you need to vent to somebody. Do you have a Macmillan social worker you could meet for a chat? Or a counsellor? If your DC has been through so much, I would be horrified if hospital had not linked you up with a support network. Chat to someone, say what you are scared to say, get some reassurances if you can. Cry and shout and scream with them. Get a volunteer in from Clic sargent to sit with your DC so you can have the time to talk. I also think going to a gym and punching the shit out of a hanging bag might help to relieve some tension - it has to go somewhere. You need to let yourself be angry. Also think about going to GP so they know where you are at in case they think you can be helped in other ways.
Saying all this, I know how futile it all feels. But at the end of the day, we do not know what will happen. Living with this horrible shadow of unpredictability is what is so draining emotionally and mentally. You need to try and voice/channel some of the feelings. Whatever happens to your DC, and a I pray it is a good outcome for you, you will still need to deal with what this experience has done to you.
My heart completely goes out to you. You need some help, please get some. If you already have some, get more.
If you could do anything for an hour or two by yourself, or with your DP, what would it be? A meal, cinema? Do this too. It won't stop how you feel, but it will remove you from the situation for a little while.
You say you are 'close to tears most of the time' which suggests to me you are doing exactly what I do, which is repress it to deal with it later. This stuff is too much over too long to repress: you need to get some of it out. If you don't, at the first sign of calm, you could have a tidal wave of feelings to deal with.
I'm on medium prozac dose so far, and have anxiety and depression, all brought about by this. I'm forcing myself to restart counselling as it was helping me. I know that I keep getting moments where DD is a bit brighter and I feel like I'm falling apart. Family are worried about me, and are sad that I kept my feelings to myself for so long when I obviously needed some help.
This is completely understandable, and nobody will judge you for it. We are going through one of the worst things a parent will ever have to. We have to be kind to ourselves and accept support wherever it is offered, even if we never have before.
Please take care, and message me if you want to say anything privately.
I am so, so, so sorry that this is happening to you and your DC. 