Saying a special needs child can go home from the hospital sounds great but sometimes it's not

I had to go back to work today so I had some friends stay with Jude. While I was away the Dr came in and they called me on my cell phone. He said that Jude's lungs are "riddled" with disease but that if we are comfortable he is okay with letting him go home. When I got to the hospital to pick Jude up the nurse told me she was shocked the doctor was letting Jude go and that she hopes we didn't have to come back. I told her we are pretty well set up at home and she confirmed the doctor said we have a great nursing set up between us and his home health care. Jude did great on the way home with his portable oxygen so I thought the night would be amazingly easy. I was wrong!

When we finally got him home it was a whole different story. I am literally taking a ten minute break because I have had SO many issues keeping Jude's oxygen up. At one point it was in the 70's but after work I got it up in the 90's again. I have given him a breathing treatment, switched out to the mask, and really worked with him. I am worried he is going to have to go back through ER and maybe through 911.

If he goes back I don't even know what to say anymore. First and foremost Jude is most important but I don't understand how I can continue to hold a job with his continuous issues. It may come down to us having to sell our house and move. I want to point out I am not whining I am working things out within my mind. So if you have money and healthy children and think I am just bitching then back off (sorry I am crabby tonight). I do believe everything happens for a reason. As cliche and ridiculous that saying can be it has always deemed true. SO whatever I am suppose to do will be laid out in front of me eventually. Whether it's the fact Jude will be ok, or we have to go back, or I have to quit, or things just work out. However I am beat down tonight. It's not Jude's fault by any means and I feel so terrible he is having such a hard time. I wish I could just take a deep breath for him.

I can absolutely not deal with anyone elses issues right now either. I feel like I am teetering on the edge. Is that bad? Is that bad after trying to stay strong for so long I am just not strong right now?

This is going to be a night of standing next to Jude's bed with suction in hand. I want to be happy positive Jenn that thinks everything will work out with rainbows and unicorns. However right now I am afraid Jude is rounding the bend for supplemental breathing mechanisms and then we have to decide on that then when do we decide we are breathing for him vs him breathing for himself.  We have Jude on his oxygen converter so we are going to try an actual tank and pray that works for Jude. He has just had it rough lately.

Signed frustrated in Fort Worth!