Another exciting decan!

This weekend Tom and I wanted to spend some quality time with Murphy. That is very difficult to do under normal circumstances. So Brandy worked on Saturday and we got to spend the day at Lake Anna with some family and friends. We had a really good day. So, on the way home I call Brandy. She tells me that they had an eventful day. Hmm….yes, she pulled out her trach, AGAIN! And for the 3rd time, it was during her nap. I am really hoping that once she goes up to the pediatric sized trach (she’s still in neonatal size) that will be harder for her to do. I believe that the cannula is longer.

Anyway, Brandy said that she could see that Harlie was waking up (we have a video monitor) so she started to go up to get her, when she heard that noise. Then she said she hauled ass. She’s so funny. Well, Brandy did a good job. Everything is good now. In my opinion, she doesn’t get paid enough!

Well, on Friday we had another appointment with the pediatrician. We had a very interesting conversation. I told him that Harlie’s cardiologist here KNOWS her and knows me. But when we go to DC to make this very important decision – and frankly – all her heart decisions – he’s not there. Other doctors who don’t know her or me are making those decisions. And I think it makes a difference. Then he said, that’s exactly why Richmond needs a full service Children’s Hospital. He said that they have been trying to get one, but the community just doesn’t know and doesn’t care. I guess until you need one, it doesn’t matter. But we put a face on why it is so important. He said that we are the only city of our size – except Waco, Texas – that doesn’t have a full service children’s hospital. We should be ashamed of ourselves. Our community, I mean.

Anyway, Harlie’s gaining about 1 to 2 ounces per week. She now weighs 13 pounds, 10 ounces. She’s finally off her antibiotics for her ear infection and c-diff. She’s had the WORST diaper rash I have ever seen. So, hopefully now that those meds are done, it will get better.

Well, that’s pretty much it. We just have to wait till the 18th. It just can’t come soon enough. I hate that it is looming ahead of us. Just another week and a half and hopefully we’ll be in a better place. As they say, knowledge is power, right? Thanks for your support.

Take care,
Christy