Surgery Update - 3PM

Well, so far so good! It is hard to believe that I'm in such a great mood while my baby is in an ICU! But today has definitely gone better than I expected, and that's been a long time coming, let me tell you!

About noon, Dr. Sandler came out to let us know how the lobectomy went. He said that her "lung tissue" was something he had never seen before - not "lobe like" at all. Completely abnormal growth and huge. So big in fact, that he had to make a larger incision and cut through her muscle. He said that would definitely make for a more painful recovery. Pathology will biopsy or study or do whatever they do to the tissue. Hopefully we will know something in the next 3-4 days. Smiling, he said odds are, they are going to say they don’t know what it is. Ahh, leave it to Harlie…

The actual procedures itself (the lobectomy and upper placation) went great. He said that we are already out of the woods as far as saving her middle lobe (which is normal if you can believe that). It now has plenty of room to grow. He said it would be a slow process, but growth at any rate is better than none! Unfortunately, because of the abnormal growth of all the connections in the lobes, he expects that she will need the chest tube for a week or so. Luckily, I knew better than to believe the 4 day estimate originally given. I planned for more than a week anyway.

We didn't get to see her until about 1ish. She is pretty swollen and surprisingly she was “awake”. She tried to turn towards us to get a better look. Ugh – it broke my heart! I am afraid that as she gets older, it will get harder and harder to see her like this. Unfortunately, we have learned that a thoracotomy is extremely painful - more so than a sternotomy, which is what she had for heart surgery. Also, cardiac kids have a much higher tolerance for pain meds, so they need a lot more than most general surgery patients. And Harlie has had a lot of pain meds in her 10 months! Her heart rate was high and she was clearly uncomfortable and in pain. So they kept on giving her more and then the cardiologist said, "bring out the horse meds". So, when we left she seemed to be sleeping more soundly.

They started a new thing here where 2-3pm is "quiet time" for the patients. They turn out the lights, no talking, no coming or going from the unit, and they encourage parents to get away and take a break. Which I think is a good thing and I thought it was timed well for her since it gave us just enough time to get all the questions answered and paperwork completed. I hope that not hearing our voices will help her rest easier. So, we left and came over to the RMH to check in and get all settled here. We will go back and spend the rest of the afternoon with her.

My mom, sister and niece are here, so since Harlie is in wonderful hands and should be sleeping soundly till tomorrow we are going to go out to eat for dinner. As everyone says here, we have the most expensive babysitters - so take advantage of it.

Everything went so well today – we could really get used to this! It just feels so good to be happy about this!!! Thank you for all your messages, thoughts and prayers. And Heather, thanks for the good luck charm – I would say it served her well today.

Talk to you soon,
Christy