Bad News...and Good News?

Friday we had Enzo's regular cardiology appointment with a sedated echo.  At our last appointment, Dr. Mack had seemed pretty concerned about some narrowing in Enzo's upper right pulmonary vein that has the stent in it.  He said, "I had Dr. Gray look at it, and we don't think it has narrowed any more than last time."  Well, at the last appointment, he hadn't even told us that there had been any narrowing in it at all.  (That could have been because Enzo had been sick at the time and hadn't been able to be sedated, so they didn't get the clearest pictures in the echo.) So Dr. Mack wanted to see Enzo again in 6-8 months.  Well, 6 months from then was about the same time as Baby Girl is due.  Between that, and all of my concerns about Enzo (a few blue-lip spells, some questionable oxygen levels, and a casual "I hear a heart murmur, but don't worry, that's normal" from his pediatrician) I decided to schedule his next cardiologist appointment sooner even than 6 months.  And I guess it is a good thing I did. 

As I was making the 1 hr. drive up to Primary's, I thought about how calm and un-worried I was about this appointment.  So far, whenever I've been super worried about going to an appointment, things turn out just fine and everything is ok. It has been the times where I was overly calm where we usually find out something was wrong.  So when Dr. Mack came after Enzo's echo to give us the news, I wasn't surprised.  Both James and I kind of expected something to be wrong.  So here's the bad news:

Bad news is, the area where the stent is has narrowed again.  They don't know how much, but they are getting reduced blood flow through that area. They are also unable to directly measure the heart pressures on the right side of his heart to see if the stent narrowing has increased the pressures in his heart. (His right heart isn't enlarged though, so that is a good sign.)  Enzo will need another heart cath for them to tell how much the stent has narrowed, what his heart pressures are, and to go in and balloon the stent open again.

The narrowing in that pulmonary vein is especially concerning because at his last heart cath (about 16 months ago), when they placed the stent, they were unable to find any blood flow to the lower right pulmonary vein - meaning that it had narrowed completely and was, in essence, no longer there.  If his upper vein closes off as well, he will loose the use of his right lung.  Without the pulmonary veins, blood will not be able to drain out of his lung and it will need to be removed.  He will either have to live off of one lung, which would significantly limit his physical abilities, or get a lung transplant.  We asked Dr. Mack about it and he told us that single lung transplants do better than double lung transplants (Enzo's left veins are perfectly clear, as of now), but that children don't do as well with lung transplants as adults do - and that Primary Children's doesn't even do lung transplants. 

However, we got some possible good news.  This echo showed some possible blood flow to that lower vein.  The echo doesn't show it clearly, but when they do the cath, they will be able to look more closely at that area, injecting some dye into his blood stream a little further than they had before, to really be sure if that vein is there or not.  If it is, they may possibly be able to stent that vein as well, giving him both pulmonary veins again. 


So, while the narrowing in the one vein is bad news, there is the possibility of really good news, which we will find out after he has his cath.  It has been scheduled for March 29th - only a week and a half before Baby Sister is due, so we're praying that she won't come early.  James jokes if that happens, we'll just have him go up to one hospital while I stay at another - since we've done it before.  I don't particularly think that's very funny, so we'll just keep praying that she doesn't come early. 

I didn't get any pictures taken while we were up there, but I did record some videos of Enzo coming out of sedation.  The first little while of him coming off of the sedation is the best part of getting a sedated echo (that and the free slushies we get while we are waiting.) He was funniest in the car on the ride home, so I stuck my phone camera over my shoulder and recorded the best I could while I was driving. Of course, the really funny stuff happened before or after I got the camera out, but for you Grandmas and Grandpas who wish you could have been there to see it, you might appreciate it anyway.  (For the rest of you, feel free to skip the videos.)

All of the funniness wore off shortly after we got home, and he turned into a little beast monster.  Kicking and screaming, trying to crawl away from me but continually falling on his head, while my very pregnant self crawled on the floor after him trying to prevent him from hurting himself, since he couldn't crawl straight, let alone walk.  I finally put him in the crib, where he purposefully banged his head against the rails.  This kind of stuff lasted for a good hour, and I was definitely exhausted by the time the day was over - but he only got one bruise on his head from falling over, and that was on Dad's watch.  :-) But I'm definitely not looking forward to him coming out of sedation after the cath.  Last time, when he was 11 months old, he screamed all night long - and that was back before he could walk and talk and kick.  So this time, I'm making sure James is with him at the hospital for the FOUR HOURS we have to try to keep him still with this leg flat.  As long as Baby Girl cooperates, I will make sure and do another blog post soon after his cath with the results.