The Latest

Yesterday, a couple ENT doctors came and evaluated Caden and did a video scope on him to see if they could identify what was going on with his vocal cords. When they did the scope, they verified that the left cord is paralyzed. I guess this is very common with coarctation repairs (although nobody mentioned it to us) as the nerve that goes to the left vocal cord wraps around the aortic arch where they do the repair. So, it is not uncommon during surgery for that nerve to get stretched, nicked or even severed. If Caden's nerve was stretched, it will likely take anywhere from 6 weeks to 6 months to heal. If it was nicked, it will be more like 6 months to 1 year. And, if it was cut, the left cord will never work. However, that being said, the right cord often compensates for the left cord not working. However, that will take time. For now, his voice isn't the main concern, the issue they are worried about is aspirating fluid into the lungs.

Caden has consistently had a high white blood cell count and the doctors don't like that. They can't find any real source of infection and he doesn't have a fever or anything like that. So, they are suspicious that Caden is having reflux up into the esophagus and then down into the lungs. If that was the case, there could be bacteria in his lungs causing infection and a high white blood cell count. So, they are planning on having a reflux study done on him where they put in a small probe down into his stomach and then monitor his feedings to see where the food goes and how it travels through the system. This is done over a 24-hour period and then the probe is removed. They only decided they wanted to do this Thursday night. So, on Friday when they went to order it, they discovered it isn't done on weekends because the technician isn't available on Saturday to remove the probe. So we have to wait until Monday.

In the meantime, because they have to wait anyway, they want to change the feeding tube that goes into his stomach to one that goes past the stomach. They are hoping to bypass any possible reflux issues and see if his lungs improve at all and if the white blood cell count goes down. When they put the NJ tube in, his feedings will go back to a continuous feed instead of a bolus feed. But for the reflux study, they will have to return him to the bolus feeds so they can see how the food moves through his body during a feeding. So we just have to wait until Monday and Tuesday to see what happens with that. Friday afternoon/evening, they were trying to get the feeding tube in the right place and were having trouble with it. They had tried three times and so far it hadn't gotten past the stomach like it needed to. The poor baby was starving because his last bolus feed was at 12:30 pm and he hadn't had any food by 9:30 pm. They ended up hanging a bag of fluids so at least he wouldn't get dehydrated. But it's not the same as getting nourishment. I hope they got it resolved after we left tonight.

Also on Thursday, the OT came to work with Caden on sucking some more. He's been doing fantastic with his pacifier and really likes it now. But she wanted to test him to see if he would swallow milk from a bottle. She thickened up the breast milk with a gel and put it in a very slow flow nipple and he actually drank some of it. Because of the concern of aspiration, she only let him drink a few mls of it. But it's a start and it's good to know he can do it when the time comes. However, based on all we know right now, we really think Caden will come home with a feeding tube and it will be awhile before he is really able to eat by mouth. We'll see... maybe he'll surprise us and his vocal cord will recover quickly. But he is taking his time with everything else, so we'll see.

The x-rays taken today show improvement in the fluid level in the left lung so that is good. The right lung has also been improving with volume The chest PT they've been doing as well as the lasix seem to be making a difference for him and that is a good thing.

Thursday night when I went to the hospital after shift change, I noticed that Caden's arterial line had really been leaking and his bandages were completely soaked with blood. I pointed this out to the nurse who called the doctor over to look. After some debate between the doctor and two nurses, they decided to change the dressings and try to “save the line” because they use it for all their lab draws. Because they're not doing the frequent blood-gases that they were doing, the doctor was less concerned about losing the line. But he was still scheduled for daily lab work. So, the doctor said to change out the dressings and they would reevaluate on Friday morning. When I came in Friday morning, it had definitely been bleeding but it wasn't nearly as bad as it had been the night before. But the doctor did bring it up during rounds and they decided it needed to be removed. And, they also decided to reduce the daily lab work to only two times/week so he won't need to be poked very often.

The nurse also removed another one of his lines so he is looking almost “normal”. Well, he still has more tubes and wires than a normal baby, but it sure is a far cry from where we were. I still can't get any of the doctors to tell me how much longer they expect to keep us in the CVICU. We are anxious to move to another unit because we feel it is a milestone and means we're just one step closer to going home. One doctor told me there was a difference of opinion between some of the doctors. She said some of them felt Caden was stable enough to move to another unit, and others felt he should remain in CVICU for closer monitoring. I guess right now the ones who want to keep him in CVICU are winning. In talking to a couple of the nurses, they seem to think he would be fine to go to another unit and are surprised he is still there. But what can we do? The doctors are the ones making the call and no matter how much we ask when we're moving out, they won't commit to anything. At this point, we know it won't be before Tuesday because that is when the reflux study will be over.

Caden had a big milestone today: he turned 5 weeks old. And, because his arterial line was removed (the dressing was HUGE), his arm was more free and I was able to put him in clothes for the first time. It's strange because he hasn't worn anything but blankets since the day he was born. He looks absolutely adorable and it makes it seem like he's just like all the other healthy babies because you can't see the stitches and incision down his chest and all the tubes and wires on his body. You can still see the two tubes in his nose, but they almost seem less noticeable when he's wearing clothes. Anyway, it was a milestone for us and it was fun. We will see what tomorrow holds.