We have a surgery date!!!

Yes, we have a surgery date! It is August 14th. We will find out the day before, what time it is and when we have to be there. I am assuming, due to her age, that it will be in the morning. Luckily we don’t have to do the pre-op stuff like we did before her heart surgery – so we only have to show up the day of surgery. He is thinking that it will be a recovery time of about 4 days. That would be great – but I am not holding my breath. Every single time she has had a procedure done it took her several days to get everything back in balance. But, with all I know about her veins and everything, I am going to be much more pro-active and assertive, and maybe that will help some.

The surgeon sent me a nice e-mail. On Wednesday he told me to give him 2 weeks, and I heard from him in 2 days. Pretty nice. He already got everything lined up with ENT as well. So, ENT will do a bronchoscopy, assess her trach size and see if they can fit a tube in her right ear. And Dr. Sandler will remove her lower right lobe and will remove part of her upper right lobe. Hopefully, leaving some of her upper lobe will help stabilize the middle lobe in hopes of saving it to grow.

All in all, the surgery will take 4-6 hours. I know that there are no guarantees, but I am so hopeful that this surgery will help her. After everything I have learned, it just makes sense that this is the right answer. And if not, then we can go back to her heart surgeon with more concrete info that her heart must be cause.

Well, on Friday we had physical therapy. Harlie did great. She sat up by herself for about 3 minutes! It was so wonderful to see. I took pictures. It would be GREAT if she could sit up on her own soon. It would make putting on her helmet and getting her dressed so much easier. Honestly, it would make everything so much better once she accomplishes that HUGE milestone.

On Saturday I took Harlie to the Little Gym with my friend Jennifer (Harlie’s PICU nurse) and her daughter, Kyliegh (she is just a few weeks younger than Harlie). It was bring a friend day. To give her a little more freedom, I unhooked her from her feeding tube, and her pulse ox monitor (she just had the oxygen tubing). Anyway, Harlie did okay. I had to wake her up to go so she wasn’t too thrilled about that. She certainly wasn’t as smiley as usual. But I think she enjoyed watching the other babies. We had to suction her a lot – but that’s typical in the morning. It was so nice having Jennifer’s help. The other people there were good about Harlie. No crazy staring or anything. But, to be honest, I don’t know if it would bother me anymore. I am just so darn proud of her. Everyday she amazes me more and more.

I was organizing some of our home videos and came across the tape from this past Christmas. All I could think about is how far we have all come since then. And that was only 7 months ago. Just think what the next 7 months will bring! Thank you for all your thoughts and prayers. I wish you knew how much it means to us to know that you are all in our corner.

Take care,
Christy

PS - uploaded more pics.