Clayson's stay at Primary Children's Hospital

This was Tuesday morning. By this time they had put a tube down his throat and sedated him. He could still move around and wake up, but he would get so upset when he'd wake him they tried to keep him asleep as much as possible. It was so sad seeing him trying to cry. He would open his mouth and try but no sound came out. They started him on one medication that day trying to keep him from going into SVT- that's what it's called when his heart rate shoots up. He went into SVT three times that day. It was so scary seeing it happen but all of the doctors would come in and they gave him a medication that restarts his heart to get it to beat at a regular speed. They said it would take a few days for the prevention medication to get all the way through his system so we just had to wait it out.

This picture was taken on his third day at the hospital after they took his tube out. It was a little scary when they took it out because his throat swelled up and he couldn't breath very well. They did several different things and after several hours he was able to breath on his own and they let us hold him. I can't even describe how good if felt to be able to hold him after all he had been through. I always had to fight back the tears the two days before when I'd walk by other babies rooms and hear them cry and see their parents hold them. It took a day or two for his voice to get back to normal but it was just so good to be able to hear him cry.

This picture was taken several hours after his tube was taken out. He wouldn't hardly let us put him down once we were able to hold him again. I sure didn't have the heart to make him keep sitting by himself in the little examination bed. It was so sad watching him when he had his tube in. We couldn't hold him and he would just pull away anytime people touched him because most the time they were poking him or taking his blood pressure or some other thing that made him uncomfortable. It got to the point where the only place we could touch him to calm him down was his head.



This picture was taken about the time they started him on the first medication to try to prevent him from going into SVT. They tried it for a few days and then doubled the dose but he just kept going back into SVT. Those few days were by far the worst. At first they would just give him a medication to restart his heart and then they decided to try doing vagal exercises to get him out. The only two that worked were suctioning his nose/mouth to try to get a gag reflex but eventually that stopped working and they had to put an ice bag in his face. It was miserable to watch. I usually would just try to watch the monitors and not him when they did it. Friday night Devan had gone home to get a few things and my mom had stayed with me.  He went into SVT and they had to do the ice bag three different times and it still wasn't working. I usually held it together pretty well and didn't cry too much but I just lost it that time. He kept looking up at me while screaming at just had this look on his face like why are letting them do this to me. After that Devan told them that we needed to figure something else out because there was no way that we'd be able to do that to him once we had him home. Sunday morning they decided it was time to start him on another medication. They were hesitant to start him on it because it has a lot of crazy side effects, but they decided the benefits outweighed the risks.  He had one or two episodes right after they started him, but once it was all they way through his system he quit having them. Once he's about four he should be big enough to do the procedure to completely get rid of the problem in his heart, until then he'll just have to take medication.



This was when they moved him from the PICU to the normal floor. He hadn't been out of his room for over a week. I thought he might be fussy because he was kind of hungry but he just looked around and cooed the whole way to his new room.

He really started smiling and cooing while he was in the hospital.

This kid hated his hospital bed. I can't say I really blame him because they were always doing mean things to him when he was in his bed. Once he got his tube out we usually just held him all day long, and I ended up holding him most nights too. Both his grandmas came up everyday so we just took turns rocking him.



Clayson just chillin in the rocking chair. By the last day or two we were there he was feeling pretty good. We're so grateful for all of our friends and family who were so supportive during that difficult time. Everyone up at primary's was absolutely wonderful. It was a hard thing to go through, but we're so very grateful for modern medicine because without it this little guy might not have made it. I would definitely not choose to go through something like that again, but it definitely made me more grateful to be blessed with this sweet baby boy.