PCMC ER =The worst Hotel EVER!

I have been wanting to post for a while, but I can't seem to get out of Severins sight with out him turning purple. Friday when we woke up Severin had his NJ tube pulled down to his chin. I called the NP and I didn't think it came out too far so I stuck it back in and super taped it to his face- Thanks to Leesa who came over for a visit during all this and calmed me down. The break down everyone has been wondering when it would happen, well it happened Friday. Thom came home from doing ALL my to dos, to me crying holding Severin. I couldn't stop. The best way to describe how I am doing is -it is very stressful to be Severins mom. Thom took over, put me in the tub and then to bed. He stayed up all night and watched Severin sleep. The kids came home on Saturday, that was good they really love their brother. I do not sleep at night, because Severins alarms keep going off. I sleep in his room with my glasses on so I can watch the monitor, and see him-I also have a 40 watt "night light" blazing. Sunday I started to feel like I was getting a groove. Severin is getting more oxygen dependent, just a small amount. Monday my day started at 5:30am I needed to do my cleaning gig while Thom was home with the kids. Severin had a Pediatrician appointment just a meet the kid he has been reading a novel on. Severin weighs 7.6. That morning I had a hard time getting his meds in through his NJ tube, but I flushed it and it was ok. I asked the Dr. about the amount I could flush with, he said 2-3cc would be ok. The trouble with these heart babies is fluid over load with empty ( no calories) fluid. Their hearts can't pump it off as well. So when I got home I flushed his NJ again. By 9:00pm med time I couldn't get anything to push through his NJ. His milk feeds were even coming out, I changed his feeding tubing at 4:30 so he probably hadn't ate since then! The home health gave us some declogger stuff that didn't work. I am in contact with the charge nurse at PCMC, and the Cardio Resident, they suggested I get it checked out, BY the way UVRMC didn't want to touch him so I left to PCMC at 12:30. While there the Xray looked like his tube was in his stomach. They could compare the Xray from the initial placement. By 4:30am it is decided it could not be unclogged, and needed to be replaced. BUT it had to be replaced by a Radiologist who didn't start his shift until 8. They started Severin on IV fluids -it had been 12 hours scince he last had anything. They gave me two blankets, only slightly thicker then a sheet, and I snuggled in using one as a pillow, on a very rigid triage bed. Severin got the Deluxe contiental breakfast-IV fluids, and I got a cup of ice water. They did offer me juice or a banana, but I have become as superstitious as they are and I thought if I accept food from them they will want to keep me longer. We were able to go by 9:00. I had a Dentist appointment I didn't want to miss. Thom and Johnathen did too, so we traded off and Thom took the boys home. I have slept 6 intermittent, one hour intervals since 5:30 am yesterday. I'm tired!
One more bit of sad news, our heart friend, Annie, passed away on Sunday. She fought for four months. None of us know how long we get our heart kids. We hope for a long life. I am reminded of a concept my friend Kamie shared with me, "what did you do with your dash?" Our birth day and death day is seperated by a dash. The concept is to make the best of your dash, no matter how long or short it is. So what are you doing with your dash?