Archive for the 'O2 sats' Category

We had a great time at the Dance For Dominic!!!

Today was the 2nd Annual Dance For Dominic. It’s a fundraising “Kids Prom.” The purpose is to help raise money for my friend’s son, Dominic’s medical expenses, but a portion of the proceeds goes toward the Cystic Fibrosis Foundation, and research towards a cure.

Just like last year, it was a great time…the children had such a fabulous time, dancing…watching a magician, eating. It appears that we were at least as successful as we were last year. We are searching for a new venue, as we seem to have outgrown the hall we used last year and this year.
Mariella was fully recovered from her stomach bug, so she was allowed to go. She was very droopy, just sitting on a chair, watching all the activity. At first, I thought that she was just tired. Until I looked at her fingernails. They were tinged with blue. So, I puffed her. Literally in seconds, she was like a new kid. I think that unless she’s actively coughing, or experiencing a tight chest…she doesn’t always realize if she’s not exchanging her air well. She hasn’t figured out that feeling. We talked about listening to her chest and her body. That her teachers at school aren’t looking at her fingernails and lips to see if she is getting blue. I’m not able to ask the teachers to look for that…it’s really not their job. Since they already think she has ADD, I hesitate to tell them that if she is lethargic or lacking attention, to send her to the nurse. This blue thing has been happening more often, and it’s concerning me. I hate that we have to wait until May 3rd for her appointment.

70 degrees and blue lips…don’t think she’s cold

We were at Abby’s dance class today, and Mariella came over to sit on my lap. I was playing with her, and realized that her lips were kind of bluish. I asked her if she was tight, and she thought about it and said no…but I looked at her fingernails, and they were a tad blue too. I gave her a couple hits of her Xop, and had her take some big breaths. Her lips pinked up right away, and her nailbeds were pink within 2 minutes or so…it’s all good now. I made sure she did her acapella before bed, in case we’ve got some mucous hiding in there.

I’m not going to flip out about it…she pinked up. I don’t hear any wheezes at all, not even deep in the small airways. We’ve got an appointment coming up soon, and I’m sure he’s going to do a chest series. It’s been a while, and I still want to know what’s going on in there.
She was totally exhausted tonight too…she barely ate dinner (but she did eat a TON yesterday, so she might still be processing that.) She asked to go to bed, and didn’t ask if she could read or anything. Tough to know if it’s belly or lungs that are bugging her.
It WAS nice to see her outside on Saturday, running and playing. She was swinging and skipping and playing in a way that we’ve never seen before. Lately, how she feels has either been FANTABULOUS or craptastic, with little in between. I wish we could get more fantabulous days, because I hate the craptastic ones. OR, if we can’t have fantabulous days, I’d settle for not craptastic.
Hopefully, she won’t do her blue thing at school, because it’s really very subtle…not anything that the teacher would necessarily notice. Stuff like THAT really scares me. That something will happen, and no one will really notice, until she’s in crisis mode.

Isn’t that always the way…

Mariella’s pulmo appt was cancelled for tomorrow…to be rescheduled for next month. I was really looking forward to this appointment. I’m really not one to beg for tests, but I was going to ask for a chest X-Ray. I know, I sound crazy…because she doesn’t really SHOW any indication for needing a chest X-Ray…BUT (there’s always a BUT, isn’t there) we has a instance about 2 years ago, where she sounded mostly clear, with a minor “squeak” in her lower lung. Her sats were at 100%, she wasn’t coughing AT ALL…we were just there for a routine appointment. Dr. Duda sent her down for a set of chest films (she was due for them anyway) and both her lungs were occluded from top to bottom with thick mucous. It looked as if a sheet of white paper had been placed behind the films.

So, basically…she can be in serious TROUBLE without seemingly being in distress. (Her doctor doesn’t even hold much to her O2 sats, since she’s had blue lips and fingertips, and still had O2 sats of 98% or 100%.)

With her being so “off” (not just behavior, she LOOKS off) I was really looking forward to getting her in. I hope that whatever is going to happen happens BEFORE we leave for the cruise. (or that she turns a corner, and starts looking and acting better) I will NOT have fun, or relax on the cruise if I’m worried about her. Thankfully, I fully trust my mom and dad…I’ll just write up distinct instructions on how to treat a flare, and when to call the doctor or go to the ER (which I struggle with, so how am I going to articulate it to them) I just wanted the reassurance that everything was OK (or a treatment plan, if they weren’t) Going to the regular pediatrician is useless…(and they admit that, with Mariella) They really don’t know what to do with her.

I’m feeling overwhelmed right now…and I probably shouldn’t be, but I am.