I'm sorry you're going through this.<p>My little girl had heart disease and a rare genetic condition, she was very sick and spent 7 of her 8 months in the ICU. Her condition was obviously chronic, my wife and I assumed her path would follow that of other children with the same/similar conditions: few weeks/months in the ICU, a few surgeries, then as they slowly get bigger + stronger, they have less appointments, less hospitalisations, more normality, etc, but still chronic, and still have very specific care needs that would affect our life, and our job/work for the foreseeable future.<p>I worked everyday from her ICU room, except for two weeks I took off around the time of birth. I was saving the remainder of my PTO/sick leave for when we were at home, and mom returned to work. Working in an ICU meant I was there in body, but not in spirit, semi glued to my laptop, as we're told my child has a genetic abnormality, a brain bleed, neuroblastoma, etc. One of my biggest regrets is working during that time. She passed away in May, I was told I was entitled to X bereavement days, and then X FLMA days. My wife and I went on vacation for 2 weeks, and I think I had about a month off total. My FMLA leave was denied (after the fact) because it doesn't cover death, only serious illness. I think bereavement leave was 3-5 days, so the remainder was personal PTO. Health insurance is through my employer, so I obviously had the "if I quit, she'll be uninsured, what if she needs another heart surgery, etc." looming over my head. So I just shut up and got on with it, and honestly, I think I'll go to my own grave with it being my biggest regret. Just my 2c.<p>Spend as much time as you can with them, reminisce about your life together, avoid anything negative, decorate their room (if they're hospitalised) with personal things (an xmas tree, new year banner, family photos, etc), play games (if able), play music, pay some bills (if they still have a mortgage, pick up a payment or two), speak to your boss/HR, see what you're entitled to, TAKE IT ALL, and apply for whatever protection you can (FMLA, etc), consider if quitting and being unemployed is a possibility, take time for yourself, your mood will affect their mood, I out-griefed my grief councillor, but I think I still would like to talk to another/or therapist when I find a suitable one, avoid drinking/drugs in excess, listen to their favourite music, buy a voice recorder and have family record music, prayers, songs, stories, books, etc. anything to lessen the beeps/alarms. Wear comfy clothes/shoes, drink water, they'll still worry about you (their child) so make sure you try to take the best care of yourself, too. Tell them you love them. Try and find healthy habits. Skip the elevator, take the stairs. Cook meals, possibly set up a meal train (mealtrain.com). I guess most important, is treat them normally, being on the receiving end of sympathy gets overwhelming fast. Actually, probably most important, laugh. My wife and I made fun of everything we could, even the sad/bad stuff, joking/laughing lessens the blow.