Namine came home from the hospital today. Much has happened, most of which I’ve already talked about – her stoma closure, her foot surgery, and the upcoming re-casting. And now we’ve got even more: g-tube removal!

We don’t actually know when Namine will get her g-tube removed, but we do know that it will be soon. I’ve talked at length about how GI won’t remove the g-tube because they want her to gain weight. Well, the special needs head doctor had a few blood tests done while Namine was in the hospital, along with a metabolic study. The idea was to determine if Namine is just burning up so many calories while relaxed and just breathing that she needs to intake more than the 1,500+ calories she typically consumes. (A typical two-year-old should be consuming about 1,200 calories.)

The result, which came back this morning, is that Namine does not burn more calories than normal while relaxed. That means that she won’t be gaining any weight by trying to force more g-tube feeds in addition to what she’s eating (which wouldn’t work anyway; she just throws up when we try). The next step is to get the genetics department involved, to determine if she has some kind of condition that isn’t allowing her to get off this plateau of 17 and a half pounds. In the meantime, they’ll remove the g-tube. Namine will be in the hospital for a few more days starting this Monday, so maybe they’ll do it then. (Hey, we can hope.) This leads me to my next point.

On Monday Namine will have her first re-cast. They actually had to split the left cast and secure it with tape because the swelling got to be so bad. Even looking at the top part of her feet which stick out of the casts, the left is so much more swollen and bruised than the right. The left has always been a little more troublesome.

I was sad to find out that during the foot surgery, they removed Namine’s sixth toe. The ortho doc had said he wasn’t going to remove it, but in the OR he decided to anyway. I guess it wasn’t actually attached to Namine’s foot by bone, like a normal toe is; it was just cartilage and flesh. Namine loved to pull on it and play with it. We will miss you, little nubby.
I wanted to keep it and put it in a jar, but Jessica says that’s gross.
Once we got home and somewhat situated again, we put Namine on her mat on the floor. It’s plastic, and should allow for easier scooting. She just got mad and yelled at us. Not surprisingly, the casts contribute a lot of weight, and it will take some getting used to. (I’m sure the pain is still considerable, as well.)

Of course the other thing Namine had done was get her tracheostomy stoma sutured closed. It seems to be healing nicely, even if it does look a little gross. There is dried blood around it from when they pulled the drain out.

As I’m just wrapping up here, I noticed that Namine has been asleep now for two and a half hours. When we were still at the hospital, even after giving her the pain meds, she still cried and cried at being left in the bed, even if she could see Jessica or myself. But when I put her to bed, she asked for some toys (and then promptly pulled all the stuffed animals off of her mobile), nuzzled her favorite blanket (made by Grandma with yarn and love), and dropped off to sleep fairly easily. Of course she stayed awake for a while talking to herself and her toys, but merely talking. Not yelling, and not crying – even though neither of us was in the room.

Just proves once again that there’s nothing like being home.

  • I am absolutely in awe of your family’s strength through this ordeal/miracle!