Bronch Results

Where to start...

First, I must say that the trip to DC overall was great. Traffic was moving both on the way there and on the way home, so that wasn't much of an issue (always a great thing).

You know, I wish I knew how many procedures Harlie's had at a hospital that have required anesthesia (in her life). I suppose I could try to go back through my calendars and see if I could find them all. Despite her knowing very well where we are and what's going to happen, she just doesn't seem bothered at all. The nurse doing all the pre-op stuff to her looked right at Harlie and said, "I can tell you have been through this too many times, you are way too good." The whole time all the other babies are crying and Harlie is just playing with us and letting the nurse do whatever she needed to do. Don't get me wrong, I suppose I am glad. If we have to spend this much time there, it is certainly easier on me that she's good and happy. Although handing her over to the team when it's OR time is NEVER easy. She does not let strangers hold her and it is agony to pry her little fingers and hands from my arms. How many times are we going to have to do this??

Oh, I have to say that there was a resident there that came in to ask me if I had any questions. HA! I should have asked him if he had any questions!! Just to give him something to think about, I asked him how long the procedure would take. He went on and on giving me some BS answer that simply made no sense at all. I should have told him that it is okay to say "I don't know." As a veteran of the OR, I saw through his BS answer, and, quite frankly, was insulted. I just smiled politely and hoped he would leave my sight as soon as possible. I looked at Brandy and she just started laughing, knowing very well what I was thinking. I really think I've hit my breaking point with residents. The next time I get someone like that, I'm going to help educate them on talking to moms like myself - politely, of course.

So, Harlie had a bronchoscopy. The goal was to see if the jaw surgery actually got her jaw out of her airway and to make sure there were no other airway issues (scar tissue, granulomas, etc.). The good news is that her airway looked great and he said that the jaw was completely clear from her airway. Definitely improved from before, of course. Keep in mind that this doc is the one that performed her emergency intubation right after her birth. He said that at that time regular intubation was impossible due to the severity of her underdeveloped jaw. And he did her bronch last year, so he knows her intimately.

The bad news is that he could not use a rigid bronchoscope, even though he was able to use one last year. This was puzzling because if anything, given the jaw surgery and her growth in one year, it should have been easier, not impossible. He said that he believes it was because of her cervical spine abnormalities. She has some vertebrae that are fused together making mobility impossible. So, basically she has a lot less range of motion (looking up especially). Great. Just when I think one of her abnormalities is "no big deal" and completely livable without being obvious or a pain in our butts, it rears it's ugly head. UGH! I guess he couldn't tilt her head back enough to get the bronch in the right angle. I don't really know what this means for her. I'm choosing to put it in the back of my mind for now.

He also looked in her good ear. I am SO happy he did that! Back when she got her wires removed, she also had an ABR test on her hearing. They said she had mild hearing loss in her good ear (which did not make me happy, of course, since she only has one). Well, he said that her ear tube had come out of her ear drum and was in the canal, and a granuloma was growing around it and it was blocking the canal! So, he removed the granuloma and the tube and cleaned it all out. YAY! That would certainly explain her loss of hearing! I noticed lately that she would play with a very loud toy right up to her ear and not even be phased by it. So, hopefully this means that her hearing is great.

So, since her airway looked good, he did downsize her trach (which allows more air to pass by the vocal cords). So, after she recovered for a few hours a speech therapist came to see her and test the PMV. The BIG moment! She brought a pressure gauge and put the PMV on and her pressures were great! And she maintained her normal sats (oxygen levels) and kept the PMV on for... get this... 10 WHOLE MINUTES!!! I was SO pleased!!! The ST said that she was good to go. Of course, during the 10 minutes, she didn't make one itty bitty little sound. We tried everything, and she just sat there with her mouth hanging open looking at us like we had lost our minds. Then she pulled it off and put it back in the container.

Of course, I've tried putting it back on countless times, and she takes it off immediately. So, I have gotten to hear some squeaks, but that's it. We see our speech therapist tomorrow, so we'll see what she thinks. Maybe she'll have some ideas as far as getting her to wear it.

Well, that's it. Thanks for reading!
Take care,
Christy