Cuddling with her texting sister Reading
Showing off her cute hair Getting kisses from her sister
Talking to Kris, our good friend Being adorable
Bella’s room was our former formal dining room. Well, she has outgrown her space. So we painted the former formal living room (aka Bella’s storage room/piano room) and turned it into Bella’s room. And her old room will be her storage room. Bella comes with lots of “stuff!” She likes it a lot better – there is more space to get into things and to pull off the vent!
This was Bella’s opinion of the two trips we had to make down town this week. Sweet girl. We had an abdominal ultrasound. Looking forward to the results of that one. Between that and the multiple samples going into the lab, we are hoping for some answers to our tummy issues of late.
Second trip was to Pulmonary. I think we have decided that her need for the vent is more of a PEEP issue than an oxygenation issue. She said the passy muir valve would help to maintain PEEP whereas the HME will not. Maybe why we can’t seem to do HME trials for very long. Bella doesn’t like the Passy. It feels different and she panics a little. But armed with this new knowledge, we tried it again and talked her through the adjustment period (so grateful she is getting older and smarter). And she has done beautifully! Yeah for you Bell! They want to do another bronch and have her stay overnight in house so they can test some things out on the vent. It’s a plan. I love plans!
My noisy Bella – she likes to hear herself – we like it too!
Man, her voice doesn't even sound like she's trached! I have heard Jax voice on the vent lately, and its music to my ears, although it makes me more sad sometimes because I know he'll probably never understand how to make noise past his trach. I hate not hearing his voice. I wonder if the Passy makes peep because you have to work harder to get air through. I'm going to look into seeing if they have one with an oxygen connection.
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