Lung News and Hannah

So, I heard from Harlie's cardiologist today. Here's what we talked about...

The chest mass is not a chest mass - it is Congenital Lobar Emphysema (CLE). It is a rare (shocking, I know) chronic disease that causes respiratory distress in infants. Air enters the lungs but cannot leave easily. The lungs become over-inflated, causing respiratory function to decrease and air to leak out into the space around the lungs. CLE is more common in boys than in girls. It is often mis-diagnosed in utero because there is no air in their lungs at that time.

Your right lung has 3 lobes, your left has 2 lobes. Congenital lobar emphysema usually affects only one lobe, and this is usually an upper lobe. It occurs most frequently in the left upper lobe, followed by the right middle lobe. Leave it to Harlie to be a-typical.

Her CLE is in her upper right AND lower right lobes. Her cardiothoracic surgeon will not operate on her lung and heart at the same time. Since her lung is deteriorating more quickly, that surgery will be first. Her surgeon said he will not do this operation. So, the head of general surgery will be doing it. I think he will go in through her back or her side. My poor babe will have scars on every area of her body!!!

Anyway, I am still waiting on a surgery date. Although I have been told that it will be in July. He said that the surgeon thinks that he should be able to remove the upper and lower lobes, and leave the middle lobe to expand some. The idea is that the pressure will be relieved, thus enabling the middle lobe to expand and grow along with her. They are thinking that we should see her breathing easier almost immediately. Ahhh! What a relief that will be!

As far as her heart goes - the jury is still out on what to do with that situation. Evidently, her surgeon is the lone ranger and doesn't want to do it. I tried so hard to follow what her cardiologist was telling me, but I simply couldn't. I just don't understand. But we will be seeing him on Thursday and Tom will go with me so hopefully when he explains it again, I'll get it.

I'm not beating myself up about the fact that I can't begin to understand everything. They have spent many years learning and gaining experience in this. I have spent many years doing, uh, other things. Like having fun and NOT learning how a heart functions, or doesn't function properly. All joking aside, it is very scary. Since they do not agree, I feel like I should have a say and be the deciding factor. But, I can't even begin to have an opinion. Another surgeon in DC said he would perform the surgery if her surgeon won't. I am not comfortable with that. So, we'll just see what happens over the next several days after everyone's had a little while to think about it.

Now, on a different note, I would like to ask you for some prayers for a friend of mine. Her name is Katie and I met her when Harlie was about to be discharged from MCV in May. Her and her daughter, Hannah, were right beside Harlie and I. Hannah also had a trach and a facial syndrome so Katie and I had a lot in common and we really enjoyed finding each other. Hannah had Moebius Syndrome, which is facial paralysis, so she could not smile or make any other facial expressions. She was so cute and full of personality! Well, Katie called me today to tell me that she lost her beautiful Hannah. She was 20 months old. Somehow her trach came out and she went into cardiac arrest. Tom and I went to the funeral home tonight. I just want to ask you to pray for Katie. We fear what she is going through right now every day. With children like Hannah and Harlie, we know all too well that things can go from great to tragic in a matter of minutes. For the past 20 months, Katie has worked non-stop to prevent that from happening. My heart just breaks for her.

Thank you for your thoughts and prayers.
Christy