Ella bella is a little more alert and coherent today. She continues to need morphine, but we are able to spread it out a bit more. This morning I got her to play with finger puppets for a little and she seemed to enjoy face timing on the iPad with some friends and family, but as the day grew on she became increasingly unhappy. As you can see in the pics, she definitely is getting more swollen by the hour --- that combined with the broken jaw certainly doesn't feel good :(. Everybody keeps calling her a chipmunk, but I think she looks more like a mini sumo wrestler between the hair-do, the eyes, and the chubby face. Well, she's still an adorable sumo wrestler to me.
Today she went for a CT scan under anesthesia just to make sure distractor placement is correct and fortunately it is. I asked them to clean her face and pins while she was sedated and thankfully they were able to. It's been really difficult to clean her pin and trach sites while she's awake as she won't even let us near her face. I'm hoping she gets better with this over time because at home in addition to her normal care, I'm going to have to clean the pins 3x/day and turn them too. Eeek...I am not at all looking forward to that. Erik has already volunteered me to be the official pin turner...isn't that nice of him? Dr. Matthews thinks we will start the pin turning tomorrow. He said we will start out slow with a half a turn working our way up to a full turn. I've heard that the turning process is quite painful, so I'm just praying that she tolerates it because I certainly won't have morphine back at the Ronald House. For those of you that know Ella, when she doesn't want something it ain't happening...unless of course an army holds her down. But, you got to love that about her because it is her feisty personality that has gotten her this far.
P.S. To all the parents out there who have already gone through cranio surgery with their children, I give you so much credit. Just as your children are warriors, you are too. Though we've seen pictures, there is nothing that could have prepared Erik and I for this. It is awful watching your child in pain and look so uncomfortable. The only solace I have is knowing that this is the first step towards helping Ella someday eat and breathe on her own. Two things that we all take for granted.
Finally Clean!!! Although it didn't last long.
We are starting to take profile pics, that way we can see how much her jaw has grown by the end of the distraction.