So Maryam has been breathing weird all day. At certain points she sounds like she's gasping for breaths. That tends to happen when she's being really active but more so today than usual. We've even given her two Albuterol treatments today and we normally don't have to give her any. I think I'm going to call her doctor tomorrow and see if we can get her in for an oxygen trace. Last week when we took her in for her mouth problem/fever she was sating at only 94% on 1/8 liter/minute. The doctor seemed to think it was that low because of the fever. I'm just curious to know if it has gone back up yet.
On the other hand, she has been drinking more water from Honey Bear Cup lately so I'm wondering if she's having micro aspirations again. Both Brett and I noticed that she was coughing a lot more today after drinking. Her ST said once that since her mouth/swallow is so "uncoordinated" that "the water is probably just going down the wrong pipe." Whatever that means. She does recover quickly, so who knows?
Oh and another thing, her gums look particularly more red today than usual. Maybe I'm just looking for something to be wrong.
In feeding clinic news, Kaiser denied our request. They said we haven't "utilized all in plan services." So, we have to try yet another ST. In the mean time, I'm definitely filing an appeal. Wish me luck!
Maryam got all dressed up for church tonight...I'll post photos tomorrow. My batteries died and I'm just too tired right now to do anything about it! :)
Wednesday, May 7, 2008
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2 comments:
I hope her breathing gets better. I know I jump at the slightest thing when Dakota seems "off". I've been curious about this for a while but does it seem to make a difference in her saturations if the cannula's all the way in her nose as opposed to pulled out farther like it's usually taped? With Dakota we notice a huge difference in saturations and breathing if the prongs aren't entirely in her nose. Do you guys have a pulse oximeter at home to keep track of her sats?
We don't have a pulse ox at home, I sure wish we did! As for the prongs in her nose, honestly we tape the cannula down so the prongs are all the way in, but after a few minutes, (seconds sometimes) she's already started pulling it out. During her last sat test I actually had it taped perfectly, so its hard to say whether it matters or not. I imagine that since its such a minute amount of O2 that it probably does matter. But as you know, its VERY hard keeping the cannula on right. We tried to stop using tape, but that was a disaster at night. She'd pull the whole cannula off in her sleep. And then we'd have to wake her to put it back on. NOT FUN.
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