Surgical Update - 9AM

Well, we got here okay. Although as soon as we got off the interstate and entered the familiar streets to the hospital I thought I was going to throw up. But, once we got parked and up to registration, that went away. They said surgery was scheduled for 7:30 and at 7:34 they came to take her away from us and to the OR. Of course, all the craziness prior was standard. We had to speak to everyone and tell everybody what she was having done today.

And here's something funny for you...because of hospital policy, they had to put a mark on the ear they were going to put a tube in. Hmmm, no opening to the other ear, not really sure how they could make a mistake on that one. But that's policy for you.

I decided against changing her feeding tube at this time. As long as she's on continuous feeds, I see no reason to go to a mic-key button. And she'll have another surgery on her bum as soon as she fully recovers from this surgery, so if she's off continuous feeds by then, we can change it at that time. Dr. Sandler said that he did not see any point in attempting to remove her lobes via a scope. She is just too small and her lungs are too over-inflated for that to work. So, instead of wasting the time that she's under, he was going to go straight for an incision. I was really glad to hear that it will be on her side, instead of her back. He said it would be about 4-5 inches long.

The anesthesiologist said he originally wanted to give her an epidural for the surgery, but with her spinal abnormalities, that was too risky. So they are going to do an arterial line.

ENT went first and about an hour after they took her, Dr. Precadio came out to tell us how that part went. And drumroll please... it went GREAT! I am SOOO excited. The ear tube went in just fine. So hopefully less ear infections there. He said he believes that she probably has all the workings of a middle ear on her left, even though there is no canal. So, we will have to be mindful if she gets a fever that it could be an ear infection in that ear - but of course you could never see it. Not a big deal when you can see an infection on the right - but now that she has a tube, she should have less infections on that side since it will be able to drain. He said IF (yes, that's an IF there) she has tracheomalacia, he didn't see any evidence of it during her resting time. Everything looked great in there. No evidence of aggressive suctioning, granulomas, or scar tissue. He said they have to use a rigid bronchoscope for her because of her jaw abnormality. And even though it is still severe, he said he thought it has improved from the last time he saw her. So, that's good.

Typically, they go to a pediatric sized trach after 15 pounds and this morning she weighed in at 15 pounds, 1 ounce! They had to put in a cuffed trach today because she's on a vent, but he said he believes she would be fine with either size. So now we are back to being hopeful that as soon as we can fit in her jaw reconstruction, maybe we can get that trach OUT!

Now for the most exciting part... he wants to do a passy-muir valve trial while she's in the hospital here!!! For those that don't know, a PMV is a one-way valve that goes on her trach. It allows air in, but doesn't allow it out. That forces the air when she exhales to go up past her vocal cords, allowing her to MAKE SOUND!!! Just thinking about it makes me cry. I have missed hearing her cry more than I can ever say. But, now that she's laughing, well, to hear her laugh would be indescribable. Makes me giddy just thinking about it.

So, all good news so far - which is so wonderful needless to say. Hopefully, the lung surgery will have the same positive results. It should be a few more hours now.Well, I'll update as I can. Thanks for thinking of us. So far your prayers are working so keep'em coming!!!