Hi, everybody. I apologize for the total lack of updates (something I promised myself I wouldn’t let happen).
Since Namine came out of the PICU and into one of the general hospital rooms, she seemed to be doing better. She’d been given some feeds by mouth, and the general feeling was that she would get to go home in a week or two.
Then, a few things happened. On Friday of last week, Jessica and I got a call from the hospital that Namine’s left leg was broken. There was a fracture near the top of her femur (thigh bone), and they didn’t know how it happened. Also, they had tried to ween her off the oxygen they had her on (called a nasal canula), but she didn’t do too well breathing completely on her own. When she gets agitated, her tongue still collapses to the back of her throat, cutting off most of her air. Let me be clear: she never completely blocks off her airway, but it’s enough that she has trouble.
So yesterday, Jessica and I met with cardiology, ENT (ear, nose, and throat), and critical care to discuss her options. The doctors all agree that she needs a tracheotomy/tracheostomy. This means that she will have a hole surgically put in her windpipe to allow her to breathe through her throat instead of her nose and mouth, bypassing all the obstruction. (It was explained to me that “tracheotomy” is putting the hole in her trachea, while “tracheostomy” is the entire procedure. For our purposes, the two words are exchangeable.)
There is one caveat: since Namine has had so many tests as of late, she hasn’t been continually on her feeds (Mommy’s milk fortified with soy formula), and so hasn’t had a chance to grow as she might have been able, although she is nearly six pounds now. So the doctors have put her back on her feeds, and are leaving her like that until Friday morning. If she is able to put on some weight (I forget how much the doctor said) and doesn’t have to put forth a lot of effort to breathe, they’ll postpone the surgery and see how she’s doing next week. If she does have trouble breathing, or if she doesn’t gain the weight they want her to (which means she’s burning too many calories just breathing), then they’ll go ahead with the tracheostomy on Friday.
This is gonna be tricky, because Jessica has a VAC appointment Friday morning. If they can do the surgery in the afternoon, then we should be able to be there. If the surgery is in the morning, then, well, we’ll be there when we can.