Benjamin has had a little bit of a setback. Abby came down with a cold on Sunday. We figured this would happen eventually. We did our best to sanitize everything, keep Abby not to close to Ben, she even found some hospital masks and asked to wear one. But, we all also came down with the same cold. As a result, Ben caught it too. Only, in him it's not just a cold. It turned in to bronchiolitis. So, I took him to the pediatrician yesterday where they diagnosed him with bronchiolitis. They also told us he is up to 14 lbs 8 oz and 26 in long. He is doing awesome otherwise. Only slightly delayed in his gross motor skills, according to the pediatrician. We have his EI eval on March 23rd. Anyways, the pediatrician told me what to look out for. So, later on, I noticed he was having some retractions and sort of gasping for breath. So, I ran him to the ER at Edward. They did a chest x-ray and saw it was clear. They did not give him a breathing treatment at that time. The reason is, the breathing treatment can raise his heart rate. So, he'd have to be on the monitors and possibly have other meds to lower his HR. So, as long as his breathing wasn't too bad, they prefer to wait.

So, we had another cardiology visit today. That was good because I get to have him checked out again. I was a little nervous with his breathing. Everything on his echo, EKG an labs looked great. All his vitals were great. But, the dr today (not our normal cardiologist-he's on vacation) said she didn't like the thickening on his heart wall. She wants us to come back next week for another echo. Now, it should be noted, our regular cardiologist also saw this thickening and was not worried at all about it. Mainly, because it's been there since the day he had surgery. And, EVERYTHING else about him looks great. So, he is not worried. But, the Dr we saw today doesn't usually see him. So, I guess she got a little more worried about it. She also suggested a biopsy to check for rejection. I am concerned with that course of action and want to check with our regular cardiologist. I also would want him to be the one to do it, if we decide to go that route.

Other than those two things, Ben is doing great! Even with everything else, the APN and the dr both said that he looks awesome. They think that he is doing pretty well even despite the bronchiolitis. He was actually laughing and smiling at the echo tech. So much so that it was hard to get good pictures. He gave him some sugar water on his pacifier and Ben liked that and stayed stiller to get better pictures. So, that is our eventful couple of days. We go back to the pediatrician tomorrow for another check up, just to make sure he isn't worsening. Oh, and in his chart at the pediatrician's office, it says, "TLC. Bring to room immediately!!" We don't sit in the germy waiting room. Thank goodness! I'd hate to think what he'd pick up in there!

Well, I had updated this last night, but then it got deleted. Hmmm. Anyways, let's see if I can remember everything I said. So, I haven't updated in a while because everything is going so well with Benjamin. He had his weekly echocardiogram last Friday. The dr said that everything is looking so good that we can now go to every 2 week appointments. He had been a bit concerned with some possible rejection because his heart was a little thick. But, every echo looked really good. His ejection fraction (EF) was about 75% on every echo. Whereas, the echo of his old heart, the EF hovered between 12-15%. And his vitals are always good and he is steadily gaining weight. SO this is excellent news. So, the dr went back and looked at the echo they first did after he got his new heart, and it seems the thickening was always there. So, he is not concerned at all about rejection. They also did this donor specific antibody test. It tests to see if Ben is building antibodies against the heart. He had only 1 tiny little antibody, which they are not concerned about at all. Yay!

SO, now we are going to every 2 week appointments. But, he will still most likely have to get blood drawn once a week. But, the good thing is, we can do that in New Lennox which is much closer to us than Chicago is. He will most likely have to get blood drawn every week for a while. His Prograf levels (one of the anti-rejection drugs) need to stay at a certain level to prevent rejection. But, since he is a baby, those levels are hard to maintain because he is always growing. So, for a while anyways, they need to closely monitor those levels. But, like I said, as long as we can do it at New Lennox, that is fine.

One fun thing, is seeing Abby and Klara interact with him. They are so good to him. Always trying to help in some way. They like to try to help with his meds. They bring the dirty syringes in to the kitchen for us. They like to carry his meds for me. Help with diapers. Anything they can do really. They also have gotten really good at knowing his meds and what time they are due. So much so that, the other night when Joe asked about his meds, I said I had done them all. Well, Klara pipped up, "except his aspirin. You didn't do his aspirin." It was kind of funny. The girls both have gotten pretty good at knowing his meds and what they are for. We have also drilled it in to them that his meds are for him only and that they are not to ever take them because not only will it hurt them, it will hurt him because he won't have his meds and he needs them for his heart to be ok. For some reason, if we make the point that he will get sick, it resonates more than them getting sick. So, all in all, everything is going really well. We have our next appointment on March 16th. And then the appt after that is for Ben AND the girls. On April 4th. We will talk to the dr about whether or not surgery is necessary to fix either of their PDA's. For Ben, it's just a regular clinic visit. All in all, great news all around though.