Crazy Day

Well, yesterday was a very crazy day.

We left my house at 12:30 to go to one appointment, and didn’t get home until 7:30!!!! No matter how my day is planned, it turns out to be an adventure of some sort.

The short version is that during Harlie’s helmet adjustment, I was holding her, and all of a sudden I realized that she was turning blue. Her nails were blue, her face was blue, and her skin was ashy. We suctioned her really good, thinking there was a plug in her trach. She was still breathing – she just wasn’t getting a lot of oxygen. We immediately took her to her pediatrician. Within minutes they started a breathing treatment and oxygen. And she pinked right up and gave us a big smile. Whew! That was scary.

But she has to be on oxygen – the second the oxygen is away from her trach, her sats go way down. (Luckily, we know from her appointment on Friday that none of this is cardiac related.) So then we went to St. Mary’s for chest x-rays. They came back that she has an infection and atelectasis (the collapse of part or all of a lung by blockage of the air passages). Her doctor gave her another shot of Rocephin (I’ve lost count of how many of these she has had to have) and will give her another one this afternoon. She will also get her last shot of the season of Synagis (her RSV shot). They will start those again in the fall.

Anyway, we are giving her breathing treatments every 3 hours and chest PT every 2 hours trying to help her get that gunk out of there. We are doing all we can to keep her out of the hospital. But if we can’t get her better soon, that will be the next step. So, with the breathing treatments, pt, the shots and a different antibiotic, hopefully she’ll bounce right back. The good thing is that my disappointment over the results of her surgery can now be fully explained. It has nothing to do with her heart. So, hopefully, once we get this infection under control and get her lungs clear, then we should see all the good results of her heart surgery.

It is a little scary to me that this could happen despite the close watch we all have on her. She’s been seen by numerous doctors, cultures have been taken; she’s been on antibiotics since the beginning of March...still this happens.

And I’m still learning – not only all this medical stuff, but learning to trust myself. On the way to the helmet fitting, her breathing was very labored. I called her doctor and told her that it was unlike anything I’ve heard before and I was starting to get really worried (and this is REALLY odd, but I’m not a worrier, if I were, I would have already gone off the deep end). And an hour later, she turned blue. Lots of lessons learned.

Well, that’s it. I have to go. Thanks for checking in. Please send Harlie some good thoughts and prayers that she fights this at home and not in the hospital. Thank you.

Take care,
Christy