First, our little adventure, and then down to the nifty gritty of her daily life here at TCH.
Yesterday, pedi surg got back to us about her g-tube being replaced with a mickey (g-button). They felt that given her complications after having her g-tube placed and her fundo, that they wanted to wait two full months……but not from that surgery …from her exploratory surgery where they removed part of her stomach, tried to drain the abscess and did the partial fundo. So, July 22nd. I, for one, plan on being home by then. What does that matter? Well that means coming back here to TCH – and as long as we are vent dependent we will travel to and from doctor’s appointments in an ambulance. Sounds like a lot of hassle for a 5 minute procedure, but what can you do?
Well, if you are a 7 1/2 month old baby girl who likes to hold onto to wires, you can get ahold of the g-tube that Mama has so pain-stakingly kept out of your reach and yank the whole thing out, stitches and all, right after Mama leaves and the PAs and RNs are switching for the night!
That is one way to get surgery’s attention. Then they might consent after all and give you that mickey button – one month before they wanted to. Crazy girl! :)
In other news, she lost weight again, but I expected that, since she couldn’t eat without her g-tube. Now that her mickey is in, she is getting feeds again – and at a higher rate. She was positive 300 last night. Her lungs sound a little coarser, but not wet. What a blessing that she is doing so much better. Before, being that positive, she would be in respiratory distress now. But she is doing well. She has also been started on baby aspirin to thin her blood a little. Her bronioscope (sp) is scheduled for tomorrow.
More fun pictures:
She is finally starting to use her hands!! I am so excited! I placed her ladybug right next to her hands. When she moves them, she hits the ladybug – and she likes it. So now she is starting to voluntarily (versus involuntarily) hit her toy! Yeah! She won’t reach for it yet if I move it away, but baby steps. Yeah Bell!
Our good friend Linda was in town. She came up and got to hold our sweet girl.
From PT today. I love her eyes! There is so much in those eyes.