Lowering O2 Sats...

I haven't been fanatical about doing O2 readings...sometimes she asks, and we'll take one. Sometimes, when she's particularly whiny for no apparent cause, we take one (both to see if she's whiny because she's feeling icky, and to "change" the activity...sometimes it breaks her out of a mood) Most recently, she's been junky and crappy...bringing up LOADS of mucous after her Acapella, so I've been doing readings.

She used to sat between 97 and 100 consistently...but even before this last flare, her readings have been quite a bit lower. Consistently between 92 and 95, with occasional readings of the higher 90's. She HAS had lower readings too...mid 80's and a couple in the high 70's. I do a treatment right away for those. We haven't really found any rhyme or reason for the super low readings...but the consistently lower readings kind of concern me. I'm just not sure why they aren't nice and high like they always had been before.

She's constantly got a ton of mucous...her lungs are always kind of crappy...she always sounds clear, but X-ray always tells a different story. I can't imagine that the mucous would all of a sudden start affecting her O2 sats. I wish I had a copy of her films, where her lungs were completely occluded, from top to bottom (looked like there was a sheet of white paper behind them) and she was sounded nearly completely clear (her pulmo heard a "squeak") and she was satting at 100%.

I've got some appointments to make for her, and I'm writing down all my questions...otherwise, I forget what I need to ask. I have a feeling that we might end up getting a Vest. As much as I would prefer NOT to, with the amount of junk she brings up, and how she sounds when she huffs and coughs, and I can hear more junk rattling around in there...I just sort of see it happening. She'd probably be more compliant with that...she really hates the Acapella...she likes that it helps clear her out, but she hates having to do it.

I sure wish I knew what to make of it all.

The long weekend away

We did go away for a long weekend. However, it was pretty much like any weekend here, except not with the comforts of home, and under the hypercritical eye of my Mother-in Law.

Mariella did end up with a good flare. I was prepared, and I started the sick plan...and it seems to have taken care of it. She has 2 more doses of Pulmicort to do, and I've stopped the albuterol nebs. She's still coughing, but I'm pretty sure it's back to status quo, and not an exacerbation. It was probably good that MIL saw a flare really going on...so she isn't so critical of me (for THAT)

We really didn't do anything to take pictures of. The one time I brought the girls to the museum to play, I forgot the camera. I'm not sure if Rob took pictures at the beach. I'm pretty sure that we'll be going back, and I'll get pictures then.

Rob had decided on this past weekend to go, because some friends were at The Cape from Pennsylvania, and Rob wanted to spend time with them. I felt as though we were at their mercy, and didn't get to make many decisions about what to do...it was all deferred to them.

It's vacation...and that means SOMEONE must be sick.....

Mariella came home from school yesterday, a whiny ball of goo. She was complaining about everything, her toe hurt, her head hurt, she was tired, she didn't want a nap...whine, fuss, fuss, whine some more. Finally, it occurred to me to take her temperature. It was slightly elevated...only 100.6 or so. Too low to treat...I like to let the fever do it's job. We had her lie low during the day, and I put her to bed early. She had complained that she had been coughing all day at school, and that her lungs hurt a little.

She woke up this morning, and was still running a bit of a temp...lower than yesterday, but it was earlier in the day...and I don't know how many other kids do this, but my kids' temp goes up as the day progresses. So, I called the Pedi and asked to get her in.

It was one of the docs that I like. He is thorough, and took the time to listen. There were times he went back to certain places and made a face...but he said he didn't hear wheezes or crackles or anything to indicate pneumonia. I wasn't going to rock the boat too much, since her temp wasn't really telling me it was pneumoia, though I wonder what he DID hear that made him listen again, and make a face.

We're headed out of town this weekend (on a side note, we have a friend who lives in a 1 room apartment who is BEYOND thrilled to live at our house for the long weekend, where she has more than one room, cable and internet) so he said to make sure I bring all her meds (that I do anyway) and make a listing of all her meds and dosages, (which I do) and a list of all the doctor's phone numbers (which I do that too) I know where the hospital is...and thankfully, we aren't that far from it. Cape Cod is kind of big, and the entire cape only has one hospital, mid-cape area. Hopefully, we won't need any of it, but it would be irresponsible to NOT be prepared for an emergent flare. It's been about a year since our last ER worthy flare...hopefully we won't break the streak. (posting about it will either ward it off, or make it a guarantee...no way to know.)

The doctor thinks the night time breathing thing is probably her response to some inflammation, and that if she seems uncomfortable, or it wakes her up, I should treat it. I'll also run it past the Pulmo the next time we go.

I've been quiet lately.

I really haven't had much to talk about. We're deep in the throes of the final days of school. In fact, tomorrow is the last day. It's a half day, so the girls will be home at lunch time. I certainly hope that Mariella doesn't need rescue in the morning, since all her meds are at home. I think I'll give her a neb before school, just to be sure.

As for the asthma front, it's pretty much the same. Mariella is barely eating again, and a wise person pointed out to me a few days ago that it's much easier to breathe when your stomach is empty. She's been asking for rescue...either by puffer or neb...nearly every day. It's gotten hot, it's gotten humid, and we've been under air quality warnings for a week now. We try to stay indoors, but even short jaunts outside...like waiting for the bus, or walking from the mall to the car has her gasping for air. Today she complained of "feeling funny in her chest" I asked if it was pain or just feeling funny...and she said it's not pain. I gave her 2 puffs, and she reported that the funny feeling started to go away.

It often amazes people that Mariella will differentiate whether she needs rescue by puffer or by nebulizer. If it's not too bad, she will ask for a puffer. If she's really tight, or is really coughing, she asks for the neb. I guess it's good that she does...I just hate that she has to at all.

As for O2 stats, she normally runs about 95 or 96, which is a change from her norm, where she was running 100% even with fully occluded lungs, where the doc was surprised I hadn't needed to bring her to the ER...but, she isn't typically desatting, though she's done that too...our lowest recorded is 79%. Treatments bring her reading up to normal, so I try not to panic. It's just another mystery...as we don't know WHY it's happening. We keep getting things that tell us what it ISN'T, and not what it IS. Even her doctors have stopped calling it "asthma" though they don't really have a name for what it IS...The pulmo calls it "IT" she's got "IT" we just don't know what "IT" is.

So, half a day of school left, a short week of vacation...then the girls are off to 2 weeks of summer camp. Mariella hated it last year...but asked to go again...we'll see how she does this year...if she hates it again, it will probably be her last year of camp.

"That Mom"

I try very hard not to be "that mom." The mom who is always calling the school, who seems to want special privileges for her child/ren. However, this year, I seem to be becoming "that mom."

It started with me approaching the principal to talk about setting up accommodations for Abby for 4th grade, or at least letting me know who her teacher would be, so I could talk to her face to face about Abby's challenges in the classroom, and the THREE things I think it will take for her to be totally successful, both in the classroom, and in the rest of her day next year. Abby does VERY well in school. She loves school, and she works VERY hard, both academically and to control herself during the day. She expends A LOT of energy, just to behave. So when the day is over, and she gets home, she is tired, and she is DONE with behaving. She just CAN'T anymore. I accept that, and we roll with it, for the most part. However, I think there are a couple of things that the teacher can do next year, that will make it so she doesn't have to expend quite so much energy just behaving. The principal shot me down, with the statement of, "we only have one child in the school with ADHD severe enough for accommodations, and unless Abigayle is failing, it won't even be considered." Legally, she really can't say that. As a parent, I always have the right to request a 504 meeting. However, I have to work there occasionally, and I would rather NOT have my work environment be stressed and strained. Before anyone says, "it's your child's education, you should push for what she needs, no matter what!" I can say with absolute assuredness that Abby will be fine, academically, no matter what. She is not going to fail 4th grade if I don't get the accommodations I want in place. So, I'm torn as to what to do, and I'm more than a little irritated with the principal. (as an aside, every teacher I've talked to about this thinks the principal is being totally out of line.) As for the "accommodations" I'm looking for...allowing her to chew gum...an accepted accommodation to help with the impulsive talking out that is common in ADHD; the ability to stand while doing seat work; and to make sure that her instructional seat is in front of the teacher.

Secondly, today is Field Day. I've never heard of a school NOT wanting parent volunteers at Field Day, but our school is notorious for not wanting parent volunteers, or parents in the school at all...for whatever reason. I think it's bizarre, but I've never found it particularly CONCERNING, until now. I emailed the kindergarten teacher, and asked if I could please be there, with Mariella's medication. It would make ME more comfortable as a parent. I even degraded myself, saying that I knew I was being an over protective parent. I got an email back stating that "I could come and be on the side lines, but Mrs. T really doesn't want parents hanging around and helping." I'll say that it's not that I don't trust the school nurse, I just trust ME more. I don't expect the teachers to read Mariella's subtle signs of distress. I'm a little afraid that if she's playing and having fun, she might not listen to her lungs as well as she normally does. We've been very successful in keeping her ER trips to a minimum, and have totally avoided emergency admissions...and I'd like to keep it that way. So, I know the principal isn't happy with me, but really, when it comes to my kids health, I don't really care.

So, I'm "that mom." The mom I always said I wouldn't be. The one who seems to want special privileges for my kids. However, I don't think they are special...or even privileges. I think that my children deserve the best they can get for their education, and the best they can get for their health, and if I have to fight people for that, well, that's what I'm going to do.

June's 12 of 12...well, as close to 12 as I could get...

So, these are in no particular order of the day. My friends son turned 7 yesterday, today was his party.

burgers on the grill

this morning, waiting for the party...the girls played...this is how they cleaned up.

Loot from the pinata

Mariella playing with her baby friend

BOUNCE!!

Cupcake Cake

Birthday cake

Snacks

Rain before the party

Setting the tent up, hoping the rain stops.

Balloons!

Eh, I got 11...not too bad. Next month, I'll get all 12

Asthma Folks...help me out.

Mariella is back to coughing. She sounds clear...I'm not hearing any crackles or rales, I'm not hearing any wheezing. However, she is doing a weird breathing thing...if you've ever seen a show on TV where someone is on a vent...and they have a quick in/out breath with a pause...then another in/out with a pause, that's how she is breathing. Almost forced.

I DON'T know if she does it all the time in her sleep...since the "cat incident" all the bedroom doors are closed, so I've fired up the baby monitor again. If my bedroom door was open and her's was open, I could hear her well enough, with all the doors closed, I can't hear her at all. Her monitor is on the other side of the room, and I can still hear her...she breathes SO loud. (that ISN'T new)

I don't want to be looking for symptoms...so I'm just throwing it out there, to see if any of you do that. I don't notice that I do it, even when I'm flaring...but my asthma is different than hers. I guess I'll have to notice if she does it all the time, or if it's only at night.

Any thoughts? Should I be concerned? Is it just her breathing now, after having to work so hard for so long? Help