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.

Church hair for Sunday

Severin has such thick hair all the lady nurses love to style it. He is IV free today, hopefully he can stay that way. We will have a discharge plan tomorrow. It all depends on how he does with the swallow study. He is not keeping his oxygen saturations regulated. He might need oxygen at home. Keeping his oxygen saturations in check is crucial for the success of his shunt, that is providing the blood flow to his lungs. I am continually reminded, Severin is setting the pace for our new normal.

Happy 24th of July

We have been home today participating in Mapletons 24th celebration. I have not been able to see Severin today. Too many things to do and people to see. I called and talked to his Nurse. He has a swallow study scheduled for Monday. This could be bitter sweet, if he does NOT do well then he will come home with NG tube feeds, and he can come home Tues or Weds. If he DOES do well then he will start bottle feeds but will have to stay longer. I was excited at the thought of him coming home this week, but I also want him to bottle feed. Maybe this is another one of those miracles I keep asking for but I want him home by Weds AND eating from a bottle or even better NURSING! I wonder when is too much to ask. He is on a very minimal amount of oxygen, so he probably won't need it at home. Feeding is our last step to home. Well I'm off to a concert in the park and fireworks. Be safe everyone

ALL the Quist Kids

July 23- Severins due date
Severin had visits from Gram and Grandpa Quist, and a suprize visit from his brother and sisters. I was about to leave but I had to take a picture for today-so I am bent over Severins bed and someone kicks me in the butt. I didn't know I had that close of a friend here. When I turned around it was Thom and the kids with pizza picnic! It's a Friday night tradition at our house. Johnathen was so excited he washed his hands and sat down he wanted to be the first to hold him. Neleh gave kisses on the head, "tickled" his cheeks. She even talked high pitch baby talk to him- we have no idea what she said. Morgan gave up eating (for the moment) to hold him. He looks a lot like Johnathen, and Johnathen LOVES that. It was good and a little crazy to have everyone together. Happy 24th everyone!
Loves!

Good bye CICU, Hello CSU

By about 3:30 today Severin was transferred to CSU (Children's Surgical Unit) 3rd floor. Otherwise known as "the floor". He has the "suite" with his own bathroom and a view. He still has just a bit of oxygen, NG-for the study medication, NJ for fortified momma milky, and one IV for lipids-he needs lots of fats. He still has a hoarse cry, they haven't done the swallow study, so no oral feeds yet. We will talk about that tomorrow. Feeding and how he is going to eat once he is home is our last goal to accomplish. Yeah!