The new and improved NJ tube- I waited sooo long

This NJ is a bit bigger, hopefully won't clog as easy. I really wish we could loose it all together. But I know we need to get a chubby baby too. If he has been getting feeds to his tummy since Friday, maybe we can transition to oral feeds easier. We have a surgical follow up appointment tomorrow.

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?

Our Boys

Johnathen can't get enough of being Severins big Brother. He washes his hands and holds him for a while, but he doesn't like it when he cries.

Neleh sushing Severin

Neleh loves to be the mommy to Severin. She kisses his feet and head. He doesn't seem to mind. What is the deal with another naked Quist kid? It's natural.

Welcome Home Severin!

We are home! We are home! Thom and I went to the hospital to pick up Severin at 10:30 am. By noon we were on our way. We used a wheelchair, but not for me this time it was for all Severins crap. We were quite the ensemble. He came home on continuous feeds through his NJ tube, and oxygen. Since we have been home his O2 sats have been in the 90s -he needs to stay between 75-85. We turned him down, and eventually off. He has been on room air with saturations in the mid 80s. "He don't need no stinkin' oxygen!" He has peed out twice- full outfit and blankets. Here comes the laundry... It is a bit stressful but we are adjusting. I'm calling this a CHECK , home two weeks and one day after surgery, that is close enough for me. Thank you for all your support and prayers it is the reason we are at this point today. All our love,

No More NG tube, No More IVs

All in preparation to go home, no IVs, a T-shirt and socks on his hands so he can't pull out any tubes. He had an NG tube for a medication that needed to be absorbed in the stomach. After the swallow study they decided he could swallow the medication, and he did it and liked it! No more NG! The idea is if they clear out his nostrils, maybe he will do better with a smaller O2 amount. Novel concept! Tonight I was giving him a facial massage- super relaxing for the kid. He kept sating too high, they had to keep turning the O2 down. Finally they just had to turn the O2 off. He was maintaining his O2 saturations on room air when I left to come home tonight. Hopefully he can keep it up through the night. They will still send him home with oxygen and a pulse oximeter just in case. He is eating 27kcals which is his goal at a rate of 18 cc per hour. Whoohoo!

"Rooming in"

I know why they call it rooming in, because you are here but not sleeping. They came in to do a blood draw. Severin is so strong and wiggly, I had to hold him down while lab chick dug around in his foot trying to get a draw. That didn't work so she went for his hand. The poor kid was a mess. And then it wasn't enough for his potassium test, so the IV team came in and started another IV, with another blood draw. We were almost IV free. And then the IV team had to do another blood draw an hour later. Yeah Severin took a while to calm down after that. Potassium came back good. Now the swallow study, he did not pass or fail. He was really upset during the test and only swallowed 2cc, with a lot of work from the Speech Therapist. He did not aspirate, and everything looked like it was going the right way. They want to retest him in a week or so. I am learning some oral stimulation techniques. The fact that he sucks and then has to swallow is too hard for him right now, he lacks the coordination and it stresses him out too much. There is no point in giving him high calorie food when he burns it all up in eating it. He will come home with the NJ, and NG tubes. He is still on oxygen, a very low amount. He will come home with that. We have our going home check list. He is still a Heart Baby. He has done so well, I forget this is HIS normal.