After having the operation room booked and being prepped yesterday morning, Charlie was saved from several extra brain surgeries at the very last minute by his neurosurgeon who burst onto the scene and declared that he didn’t think our son’s new shunt was infected after all. This could still change but we were thrilled to bits that he was not going back under the knife to undo the surgery he had last week. And the shunt seems to be working much better than it was a few days ago.
Charlie has been pretty out of it since Wednesday morning so yesterday they stopped the morphine and Phenobarbitol. But he was still intubated and every time he came to he completely freaked out from the tube shoved down his throat. To be honest, last night was one of the worst nights I’ve spent in the NICU since this ordeal began, watching Charlie cry (silently because of the intubation) for hours and writhing in misery. I pulled a few Shirley MacLaines begging people to do something, convinced that the fact of being intubated was causing more problems than whatever was making them keep him intubated. Happily, the late-night doctors agreed and said he could probably be extubated in the morning. The problem was, if they knocked him out with more pain medication that would probably delay the extubation so he just had to get through the night, God love him. That boy has the strength of Hercules. I’ve had one surgery my whole life, a lowly appendectomy that I kvetched about for weeks. Kendall’s only surgery was her emergency C-section last April. But our boy has already had four major surgeries and gestationally he's less than a week old!
Thank God the official extubation order came through early this morning. Seeing the respiratory therapist yank that tube out of Charlie’s throat was literally one of the happiest moments of my life. He went back onto the nasal cannulas and it took most of the day to get his blood gases normalized but we talked the doctors into waiting before taking action because we knew Charlie could do it without further intervention which he did. Go, Charlie! Yes, yes, Mr. Evil Eye, you killjoy, I realize that there will be lots more challenges to come—maybe tomorrow, next week, next year, but hey, do me a favor, will you please? Shut the fuck up, I’m talking about TODAY! I’m so grateful for the thoughts and prayers of the many people rooting for Charlie, I truly believe that makes a huge difference. Thank you, thank you, thank you!
The photo above was taken shortly after extubation. Charlie still has a bit of generalized edema from the surgery and currently bears an uncanny resemblance to Jabba the Hutt but that’s already starting to correct itself. They also shaved his head for the surgery so he looks even more like me than usual (and believe me, Jabba and I are peas in a pod these days). But he was so, so much happier today, getting back to his old self, and I can’t wait until we can hold him and feed him again. But right now, I'm just rejoicing in his huge improvement over yesterday. Woo-hoo!
Update: I was surprised by some of the reactions to the above photo and the video—I was so relieved that Charlie was finally extubated that I thought my puffed-up Michelin Man looked so cute afterwards, but on second glance I can see how it seems a bit scary! Especially that position with his head pulled back to open his airway. I just left the hospital at midnight and most of the swelling is already gone, he's cute as a button. And I even got to hold him for three hours tonight after a week of deprivation. Double woo-hoo! And a prize for anyone who can identify who's singing in the video.