Tuesday afternoon we changed Autumn's breath rate from 14 to 10. She been doing WONDERFUL on the new rate. The first night she needed some O2 I think from being a little tired from the new rate during the day. Yesterday though she spent all day (minus naps) on the new rate and sat at 98-100 all day and she needed no O2 last night. Also, during her naps she will last on the 10 rate for about 30 mins before desatting and needing to be turned up. If she continues to do well I will move her rate to 6 on Tuesday.
She has really improved with her head control these past 2 days. I will sit her in the corner of her bed and she will sit forward and hold her head up for about half a minute and just look around everywhere before falling forward. I am trying to teach her how to push herself up with her arms but she's not interested. She also is eager to try and roll in her bed. Yesterday I had her almost all the way on her tummy and she rolled to her back. She is getting a little more interested in things and wants to be more mobile.
She also got into trouble with her nurse this afternoon. He said he had just fed her and turned around and saw her pulling on her button so hard that she was almost pulling it out....I just gave her a new one this morning because her last one got a hole in it. So, he said later he had her sitting up and she grabbed her vent tubing and had it pulled all the way over her head. This morning she made her vent alarm go off from pulling her tubing up. She just gives you that big sweet smile so it's hard to get mad at her. ;) She's also getting a little spoiled and sometimes cries if you leave her alone in her room or put her down after holding her. So, it took about 4 months to get her all spoiled at home. I think she is going to have an interesting personality and may be a little mischievious (sp).
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I'm really excited that Autumn's tolerating the weaning so well! She's making great progress. Just keep in mind that there will be some days where she doesn't tolerate it as well, and other times when she may not tolerate it at all... but I promise she'll pull through. Weaning from SIMV is a difficult process and it turns into a two steps forward, one step backward game. I hated it at the time.
Sleeping always seems to be a big issue with kids like ours. I wonder if she might tolerate a rate of 12 during her naps? To kind of wean her down while sleeping too. It might be worth a try next time, depending how far she desats down.
I'm glad she's making an effort with her head control! Mac doesn't like pushing herself up with her arms either. Durn lazy kids.
Ahh.... the MicKey button fight. We always have to keep clothes on Mackenzie because that's the first thing she grabs at when she gets naked. It doesn't bother her but it hurts me to watch. :o( Btw, do you ever go to the pedi surgeon for MicKey check ups? We haven't been taught how to change the MicKey button, so we have to go there in order to have it switched out. We go the week after next, so I'm hoping we can learn then so we don't have to travel just for that. Oh, and does it hurt her to change it out? I've googled videos on it and all the kids I see cry and scream. :o(
Aaannnddd my philosophy is that you can't spoil a special needs kid. They've been through so much that it's just kind of making up for their traumatic experiences. Or at least that's what I tell myself. lol
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