More lung issues

As you probably noticed, I took a few days off from my journal. I try to stay as positive as possible, but to be honest, that has proven to be very difficult these past few days. So, I didn’t feel like writing.

For the past few days I have been working on getting the surgery scheduler in DC to put Harlie on the surgery schedule so we can plan ahead. (No, the surgeon never called.) But hospital protocol is that you have to have a consultation appointment with the surgeon, and at that time, surgery is scheduled. Of course, they only do these meetings once a week typically, and the first day he’s back is July 18th. So, we are on the schedule for that day. But, I didn’t want to wait to schedule her surgery. I already feel like we are limping as it is. But, I didn’t get anywhere. So, I called her cardiologist in DC to see if she could help.

Before talking with her today, I had a lot of hope that this surgery was the key to getting Harlie better. But she told me that it isn’t that simple. Of course not. She said that it is not so clear that the surgery will work. There are risks. One risk is that after he removes the upper and lower lobes, the middle lobe could twist, causing more problems for her. Another risk is that there is a blood vessel running from her heart to the bad part of her right lung. They don’t know what’s going on there. She said that they presented Harlie’s case to an audience of doctors. One of the doctors there was a visiting doctor from CHOP (Children’s Hospital of Philadelphia). He said that based on all the information, he thinks there are too many unanswered questions. I guess the group agreed. They have no experience with Harlie’s combination of issues. So they want to do some more tests. They are working on getting all of them scheduled for the 18th. And, the surgeon needs to meet with Tom and I to explain all the issues. And together, we will make the decision on what to do.

Personally, I don’t see how we have a choice. She is at her max caloric intake, and she is working too hard to breathe. Plus, she is still vomiting on a regular basis. She is barely gaining any weight at all. Clearly, we have to do something. It has gotten so bad for her, that I can’t move her about the house. She is fine in a cooler room that has a ceiling fan, but the second you take her into the dining room or kitchen, she’s miserable. She gets too hot and starts sweating. Then she starts coughing and gagging and then she vomits.

At a doctor’s appointment, they told me that her breathing heavy is like us running a marathon. That’s what it feels like to her all the time.

So, now we wait until the 18th. Her DC cardiologist said that if we decide that the surgery is the way to go, then he will put her on the schedule for later that week or early the next week. She said that if necessary they will admit her and work her in the surgery schedule as an in-patient. I don’t really understand the logistics of all that, I am just trying to plan ahead since I have a 3 year old I have to think about as well. I have no idea how long of a stay we should expect either. Again, we’ll just have to wait till the 18th to have our questions answered.

So, that’s that in a nutshell. And it is now late, and it has been another long day, so I have to go. Have a nice 4th.