Evening Update – Oct. 5

Wanted to post this earlier but wanted to surprise a couple folks like Megan’s BFF.

Megan had her trach changed to a smaller size. Once the coughing was done she was able to make some sounds even without the speaking valve and with effort said some words. It was amazing hearing her voice.

Mid afternoon speech therapy came and used the speaking valve with her and she was able to speak more easily. It still takes some effort but she is loud and clear. Sounds just like Megan with a hoarse throat.

Spent a lot of the day talking with her. Mostly it’s been pretty amazing. There have been a couple heart breaking things.

She is able to smell more now. It’s been weeks of very muted smell since very little air was going through her nose. With the smaller trach she is drawing air through her nose and the hospital smell is really bothering her. She thought she was down in the OR and kept asking to go up to her room. I suspect the OR has a stronger antiseptic smell so that is what is triggering it. Also they gave her atavan to calm her and then did the trach change and two minor procedures to remove some of the lines in her, so as the Atavan wore off she was confused and the smell just really threw her. She can’t seem to shake it either.

Being able to hear her also led to another conversation about her leg. Only she is convinced it’s still there. Today it has had a fake spider on it, a sock she wanted off, and it’s been under water. When I told her that it was gone she told me “not funny dad” and when I moved the sheet to show her she said she saw it and then counted “1, 2, 3, 4. I have all 4 limbs.” Then she had a melt down and told me to stop teasing her. Broke my heart and I had a melt down myself in the bathroom.

Mostly it’s been good though. She can ask for what she wants and tells us what is bothering her. We can communicate and she is fully Megan. I think the doctors are going to be amazed by her recovery.