Moving along...

Things are still improving. Slowly. But improving. The only thing that is getting worse is that Harlie is stuck to me like glue. She wants to be attached to me 24/7. It’s not good enough that I’m on the floor playing with her, she needs to be in my lap. And sometimes, that’s not good enough, she needs to be wrapped around me. Either way, she must be touching me or she cries.

For the most part her incisions look pretty good. Except for one under her jaw (there are three under there). But I spoke with Dr. Magee’s nurse today and she said as long as it doesn’t look infected then it is fine. I don’t think it’s infected, it’s just bleeding through a little bit. Her trach collar irritates those incisions at night and during her nap. But, there’s nothing I can do about it. She has to have the humidification.

I thought I was going to have to take her out in public today. I didn’t know if I was ready for that. Murphy had a doctor’s appointment and Brandy couldn’t work today so that meant that I would have to take both kids for his appointment. But it turns out I didn’t have to worry about it. The office called to reschedule the appointment (doc was stuck in the OR). Murphy will be seeing the same doc that did Harlie’s nissen. Murphy has to have a relatively minor surgical procedure. But I’ll know more about that next week.

Dr. Magee’s nurse did say to give her a few more days and then I can take her out all I want. She said it might do Harlie some good to get out of the house. Which makes sense. Plus, it will be better when her hair isn’t coated with Bacitracin. The greasy look isn’t really a good one. Ever.

Harlie still doesn’t want to walk. Her occupational therapist came yesterday and she said that maybe Harlie was feeling top heavy due to all the swelling. The bruising seems to be going away a lot faster than the swelling. I certainly notice that more anyway. For some reason only the right side of her mouth can go up when she smiles. Her left side still isn’t moving. Which is strange to me considering all the major work was done on her right (that’s why her right eye was swollen shut).

The derma bond (glue) is starting to peel from the incision between her eyes. I want to pull it. But I must resist the temptation. That incision is where they put the screw that holds the wires. When the wires come out, they will leave the screw in there (it’s titanium).

We have a date for the wires to come out, August 5th. Which is exactly 9 weeks from her surgery and 8 weeks from now (not that I’m counting or anything). They are also going to do the ABR (auditory brain stem response test) on her left ear. They were supposed to do it during this past surgery, but it was cancelled for some reason. So we have to wait 8 more weeks to find out if she has an inner ear (which could mean the ability to hear down the road). Both procedures will happen while she’s under anesthesia and will be a day surgery thing – in and out in one day. Woohoo! Haven’t done one of those before!

We also have a date for her third heart catheterization. That will be August 19th. The last one was last June and did not show good results. HOWEVER, that was BEFORE her lung surgery that changed everything! So, we are all hoping that her better lung function will mean better heart function and results.

I suppose I will try to squeeze in an appointment to see her ENT in DC between the wire removal and heart cath. I am assuming that’s who will tell us if her jaw surgery was a success, and if so, what kind of decann plan (getting the trach out) he will have.

Well, Mike and Marcy had their baby yesterday. He’s a tiny one – 3 pounds, 10 ounces. But he’s doing great and breathing on his own. Marcy is doing well, all things considered. And Lindsay had her baby, she’s adorable. Hopefully I’ll get to see them all tomorrow. Well, that’s it for tonight.

Take care,
Christy