How do you do it after?
29m, 23f. Dad typing this.
How the hell are we supposed to do this?
Moms water broke 5 months early, baby was born 4 months early. Our baby just got promoted to ITU after 9 months. He's got Agenesis of the Corpus Callosum, a trach and vent with high settings, a g tube. He's almost died in our arms more times than we care to count.
My wife lost her job (wasn't at her job for a year so she couldn't get FMLA or what ever), dropped out of her undergrad (was going to become an OBGYN). Her education may have been a complete loss. We don't see it working out.
I work remotely but I don't know for how long, it's very demanding work and they may require me to go back to office (it's okay pay but not nearly good).
Fiances are so stupidly horrible. Cards maxed, pulled out equity on the house due to a tornado. Medicare or Medicaid which ever the fuck it is, is fucking us around on hospital bills which is just A HASSLE. Because of fucking course. An uninsured driver hit our safer car and straight up said he isn't going to pay and it'll take fucking months to get money from them if we even get anything. Will more than likely foreclose on our home that can't sell (we have dropped the price 50k below the appraisal, we will lose the 100k I got from my dad's will that I put down on the house)
To get out of ITU we need to take classes on trach and vent stuff, have a home with specific things, have 2 nurses at home for him so he will get 24/7 care. Don't know when to find the time for the classes when I work, I can't lose my job because then we won't have a place to fucking live so they won't fucking release him.
We don't know how we can afford a therapist or antidepressants. If those even work anymore. Our mental health is in shambles. We have gone through horrible nurses, horrible doctors, lack of care, and terrifying nights. We nearly lost all our friends moving to the city where the ONLY hospital in the state can care for him.
How the hell do people do this? How are we supposed to make this work? Tomorrow we have a meeting with the team about some things we need to accomplish before we can think about home. But what home? What life? What money to pay for food?
There's no right answers, family and friends don't have advice. No one in our life deals with this to any extent (thankfully, I wish this on no one). I've been told to let him die, to foreclose on the house (how will I rent a place if my credit is shit? Then I can't take him home), to rent it out, get a second job and her get a job, , how will we take the classes? How will we find nurses in a nurse shortage? Some nursing agencies won't even watch him because of the vent.
I'm tired. I'm ranting. There's probably so much I've left out. I'm sorry. It just feels impossible. We get a sliver of good news and a buffet of bad the next day. It's always fucking something. I'm so lost.
My son is cute, he's smart and responsive. He's worth it. He is strong.