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Tomorrow...

I HAVE to call the pulmo tomorrow. We're working on needing at least one treatment every day...and while I can easily explain it away by saying it's humid and hot, and her lungs hate humid and hot, the fact of the matter is that on the medication she's on, humid and hot shouldn't be setting her lungs off. She should be "normal" for all intents and purposes. She is not normal. She is not even close to normal.

I don't hear anything particularly concerning in her lungs. I'm pretty good at hearing pneumonia...it sounds like rice crispies.

However, in the past week or so, on top of being tight and wanting treatments, an increase in her cough (she never doesn't cough) she's also had some wheezing, which is atypical for her...and her sats have been way lower than I like...and she's been asking for me to take them, telling me she feels weird. I don't really think they are low enough to cause her to be lightheaded or anything...and she just says she feels weird.

I also have to call to make the appointment in Boston. Every time I get set to call, something happens, and then I forget to call. Denial isn't just a river in Egypt. Even though I know better, sometimes, I stick my head in the sand. I just am not looking forward to having MORE tests done. I hate putting her through them. It kills me every single time. I want to know how to help her feel better, and I know that we need to do the tests to do so...but I also just HATE watching her go under the anesthesia...kissing her good night and saying good bye as she's going under kills me every time. One would think I would get used to it, but I end up walking out of the procedure room with tears streaming down my face every single time.

So, tomorrow...my job is to call the pulmo, to call Boston, and hopefully, getting her seen here next week (ha) and in Boston in a short amount of time...(HA)

What a difference a week makes.

Last week, we had a fabulous day. Mariella got progressively worse throughout the week...needing rescue a couple times a day, but not what I would consider a true FLARE...just breathing crappy, and feeling crappy. It's hot, it's humid, and her lungs really don't like hot and humid. It's a "trigger" that we can't really avoid...and treatments or rescue puffers take care of it for a time. I THOUGHT she was going to flare, when a neb wasn't holding her more than 2 hours...but it cleared on it's own almost immediately.

Fast forward to yesterday. Her newest "thing" is to tell people that she's "not feeling very well" when she needs an "excuse" for being whiny or complaining. She doesn't like being told that no one speaks Whinease, and that no one wants to hear her complaining. So, now, she'll get called on it, and she will say "I don't feel very well." In her defense, when she's feeling really crappy, she IS really whiny. Yesterday, her friend wasn't being very nice (in her mind), and she was whiny, and when he told her to cut it out, she said, "but I don't feel very well" I asked if she was too sick to stay, and did we need to go home...and she didn't want to, so she kind of bucked up. This morning, the whining and complaining over everything from what pants she was putting on to her hair being brushed was beyond annoying. I told her to knock it off, and to act her age.

Had I been thinking, I would have put 2 and 2 together and realized that she was going to have a vomiting episode soon. It's been a few weeks (maybe almost 6...a huge long time) so she's been due for one, knowing her pattern. Alas, I DIDN'T put 2 and 2 together.

We stopped for munchkins and strawberry milk for breakfast. (keep in mind that last week, on the way to drop Abby off, she ate chicken nuggets, fries and milk, right before getting in the car) She ate 3 munchkins and had about 6 sips of milk. About halfway into the ride to get Abby at camp, Mariella started to really whine. I suggested that she try and sleep...she didn't want to. She was tired, she was bored, the sun was too bright...you name it, she whined about it. Finally, she said her belly hurt. I asked if she needed her bowl (never leave home without it) and she said yes. A few minutes later, and she threw up. Of course, she never just finishes throwing up when we're in the car...she gets herself to stop. If she just finished, she would be totally better. We stopped at a little corner cafe...with a sign that said "no public bathrooms" They were nice enough to let us use their bathroom. We got her cleaned up and back on the road. She was better-ish, but not all the way better. She threw up again, so we pulled over to a gas station to clean her up, and call camp to tell them we'd be late.

After the second blow, she was totally fine. She had a little snack, and some water, then gatorade. We stopped for lunch, and she ate a ton...She didn't throw up again.

On the bright side, because the car ride accelerated the "blow," she won't be whiny and miserable for up to a week, which is sometimes how long it takes from the beginning of her getting whiny and feeling exceptionally crappy to the blow that makes her feel better.

Now I have to watch and make sure she didn't aspirate anything that will set of a true flare. It's always a concern, but I'll know in a couple of days.

Every once in a while.....

I wish that Dr. House really existed. Though I doubt that Mariella's case would interest him much. He'd probably pass on it. Maybe, just maybe, though, there would be enough mystery in her case study that he would decide to take it on...or maybe one of his team is a sucker for tiny, curly headed cuties who have trouble breathing.

It seems like for every one great day we have, we have 10 that suck. Ok, maybe not 10...but since I posted about her great day...every day since has been horrible. Culminating in this evening when she asked for her puffer earlier in the day, and this evening, when I said, "I don't like how you sound, we're doing a treatment." she didn't argue, at all. Treatments may only take 5 minutes, but she still hates doing them. The only thing that made it tolerable tonight was that her friend was over, and he had to do nebs as well. Normally, she would have complained, said she didn't need to, because it would have ticked her friend off to NO end, that she didn't have to, and he did. The children are as close to siblings as 2 children that are not siblings can be. This includes the propensity to torture one another, and to tease one another unmercifully.

So, she did a treatment at about 8:30PM and it's just over 2 hours later, and she's coughing up a storm in bed. She hasn't woken up yet, but that's not unusual. Her body is so used to doing it's thing, that she rarely wakes up for the cough. Her Pulmonologist says that's not unusual for children that have such poor control for so long. Instead of asking if asthma symptoms wake HER up more than twice a week, he asks if her asthma symptoms wake ME up more than twice a week.

Of course, I have to work tomorrow, and I really SHOULD get a good nights sleep...but I'll be listening to her breathe, rather than sleeping...and I'll be exhausted tomorrow. Ah, well...it is what it is.

An AWESOME day....

I don't get to post about these all that often...so, because I can...here goes.

Mariella had an awesome lung and tummy day yesterday. She woke up early, and got her own Prevacid and Align. (I put them in a days of the week pill holder) and hung out for a while.

I got up and got her breakfast and did puffers before church. When I got home, it was time to get Abby finished up for camp. We did that, piled in the car and left. We stopped for Burger King on the way, and Mariella ate all 4 chicken tenders (a coup for her) and 3/4 of the pack of fries (again, unheard of) and all her milk.

After the car ride (over an hour on windy roads) with no complaints of her belly (see, everyone, she doesn't get carsick, just when her belly is really bugging her, car rides set her off) she proceeded to have 3 HUGE cookies while we were waiting to get Abby registered at camp.

Another long car ride home...she slept for a while of it, she started begging for Ruby Tuesday's for supper. I was asleep too, so I don't know how she convinced Daddy. We stopped there, and she had an entire plate of pasta and marinara (she usually eats about 1/4) and she ate some salad bar too. She got home, and had a pudding for dessert.

Seriously, that's more food than she's eaten in month combined. I won't lie and say I didn't expect it all to be making a reappearance during the night, but I didn't hear her get up, and her sick bowl was unused...so it didn't.

Good eating and good breathing go hand in hand. Yesterday was rescue med free. She even LOOKED good all day. She ran and she played. Holy normal day. I asked how she was, and her answer was "it's a little weird, there's nothing in my chest, and nothing sitting on my chest. It feels pretty good" I could get used to great days like this. (weatherwise...it was hot (in the low 90's) but not excessively humid. I'm sure the story would have been different if it was humid, but I'll take it)

Today is more typical. She's got a wheezy sounding cough going...not enough that I need to treat it, just enough to remind me that I have to pay attention. She's not eating today at all...but that's probably more to do with the fact that she's still working to digest yesterday's huge food haul.

I LOVE good days.

Camp is done

Day camp is done for the summer. The girls only do one session, which is two weeks long. Despite the intense heat, both the girls did great. Abby thrives at camp, she looks forward to going every year. Last year, Mariella wasn't entirely thrilled with the idea of camp...it's a long day, from 9-4, and she had never been in an all day program before. Her stomach was still very much out of control, still, so on top of not feeling all that great (which is still the case) she also was afraid ALL the time that she was going to vomit. It embarrasses her so much when she is sick, so it was an emotionally uncomfortable place to be.

This year, because she's been at school all day for the year now, she was much more willing to spend all day at camp. She came home excited and happy every day. She didn't ask to stay home at all. In fact, this morning, Abby woke up not feeling well, and asked to stay home. Since she loves camp so much, I knew she wasn't faking anything. Especially when she asked if she could watch TV, and I said, "no, if you're too sick to go to camp, you need to be in bed for a while." Her response was, "ok, can I read?" I was SURE that I would tell Mariella that Abby wasn't going to camp and I would hear, "I'm too sick to go to camp too." I DID hear "My belly feels pukey" but her Prevacid and a Baby Tums fixed that. She had a good day at camp and barely noticed that Abby wasn't there. As she walked out, she said, "can we sign up for next year NOW?" I really wish we could afford another session for her, but it's just not in the budget or the schedule.

On Sunday, we bring Abby to overnight camp for the first time. She's spent time away from us many times. They spend a week with my parents every year, so I'm used to her being away from home. I'm NOT used to her being away from home, and not with family. Camp is run by our church denomination. She is doing the "sampler." It will give her a small taste of everything that camp has to offer. She has already decided that she is going to love it. (I'm sure shes' right) She is also already making plans to go next year. I think the only thing she's worried about is whether or not she's going to like the food. One of our friends has gone to this camp since he was a kid, and he now goes back to run one of the sessions. He is a foodie, and has nothing but rave reviews for the camp cook, so I'm sure it will be great. Abby is actually quite disappointed that Brian won't be at camp the same time as she is, but she'll deal.

We're going to have to come up with some fun things to do with Mariella while her sister is gone. They adore each other, and really do enjoy each others company. They get into little tiffs once in a while, but nothing like I hear other parents complain about. Typically, it's just Mariella whining about some imagined slight...and once she's told to "buck up" it's over. I don't know what she's going to do with herself without her sister around.

I'm looking forward to a little relaxing. Get up when we want to, get dressed when we want to. That will be nice.

We LOVE camp!!

If I didn't have enough reason to love our YMCA camp...I have another reason today. It is HOT and the emphasis isn't being overly dramatic. It's over 100*F with humidity that brings the heat index even higher. To say that I was a bit concerned with sending Mariella to camp today (and the rest of the week) would be an understatement.

She was sent off with a water bottle full of Gatorade, with instructions to fill it with water, and drink at least all the Gatorade and one bottle of water, if not more. She was also instructed to REALLY pay attention to her chest and her breathing, and that if she started to cough, even if she didn't think it was "that bad" to ask for her puffer. I'm confident enough in her ability to self-manage, because we've taught her how, and with the extra instruction to really pay attention, I was OK.

When I picked her up, she looked "droopy" but not bad, at all. I looked right at her, and said, "How are you...are you OK?" The Camp Director was standing with the girls, and she said, "We paid close attention to her, asked her all the time if she was OK, and pushed the water." It made me feel much better to know that the director was paying attention to her. (and I'm sure that ALL the asthmatics are given the same attention, because we didn't ASK them to pay close attention.)

I made her laugh, because I said, "with the temp and the humidity this high, I'm going to be 'overprotective mom' and ask...not because I THINK anything is going to happen...but because I just need to know...where do you transport if she gets into trouble." She laughed, because I'm sure she understands overprotective mom. Her answer was fabulous...she said, "we go to Noble (it's just about 2 miles away, and perfectly fine for an asthma related emergency) and I ride with her. We'd contact you, but not until AFTER we call the ambulance, so you'd get a call as we were on our way." Again, not that I expect that it will even be an issue...but her answer made me feel MUCH better. (Last year, the weather was FAR different. The girls wore sweatshirts every day, and it rained...it wasn't heat advisory weather)

Tomorrow night is the big "sleep over." Mariella wasn't able to participate last year, because she was too young. She's super excited about it...Abby has been doing it for several years. We got them both new sleeping bags...Abby's was ruined after camping out in the rain last year. I'm not sure what I'll do with myself with a whole night to myself.

What does it all mean?

I've mentioned a couple of times that Mariella's pulmo no longer calls what she's got "asthma" Since he doesn't have a name for it, he literally just says, "she's got 'IT', we just don't know what 'IT' IS."

Tom Petty had it wrong. It isn't the waiting that's the hardest part. The hardest part is not knowing where this is going. Without a firm diagnosis, there is no firm direction in which this is going to take. We can't make proactive treatment modifications, because we don't know what we're trying to head off. We can change treatment protocol quickly, as issues arise, but we can't head them off. That, of course, means some amount of suffering on Mariella's part, and on all the rest of us, too.

I've also mentioned that Mariella's treatment protocol is sort of a hybrid of asthma treatment and Cystic Fibrosis protocol treatment. Her lungs look like a CFer. She has thick mucus that is hard to move. She has gastro involvement that looks like a CFer. She has poop issues that look like a CFer. In fact, she looks so much like a CFer on paper, that every new doctor we meet asks if she's been sweated. She has been. Twice. Her symptoms are so compelling that we've also had the genetics run. What she has isn't CF.

If it was, we would know in which direction to go with treatment. We would know what to do to try and stave off lung damage. We would know what to do about her malabsorbtion. Her lack of weight gain would have a reason, and we would know what to do about it. I'm not saying that I wish she had CF. I don't. I wish we had a firm, clear diagnosis. A path to follow.

Most of the time, I am of the opinion that no diagnosis isn't a horrible thing. It means we just keep treating things as they happen, and do what we do, and it is what it is. There are other times, when I'm not feeling so optimistic, that not having a diagnosis scares the crap out of me. Without a path to follow, how do we know we're going in the right direction. We add medications upon medications, and the most it gets us is 2 good weeks. A couple of weeks where my child can be "normal" then her lungs get pissed again and I'm left wondering what the hell we're doing.

The fact that her condition keeps changing, and not for the better scares me too. She takes THREE controller medications. She shouldn't be having symptoms more days than not. We shouldn't go to a friends house, where the child who lives there has CF, and be listening to the "not sick" child coughing up a lung. I shouldn't be doing chest PT on my asthmatic child, so that she can get more crap out of her lungs. She shouldn't HAVE crap in her lungs. My friend shouldn't tell me that she talks about my daughter to other CF moms, and they all ask if we're SURE she doesn't have CF. She shouldn't have sat in a specialists office and said, "you're not supposed to be talking to me, you're supposed to be talking to my girlfriend...her daughter is sicker than my son."

I'm so tired of going to the doctor, and finding out she's lost more weight. My 6.5 year old child shouldn't KNOW her weight, let alone be aware that she's LOSING weight. I shouldn't have to worry each time she doesn't finish her plate of food, why she didn't eat...and I shouldn't have to worry that finishing her plate might mean that dinner will make a second appearance, due to the fact that she overfilled her belly.

I guess I'm just feeling low today. Mariella is taking a long time bouncing back to status quo after this last flare. She has the junky cough that is nasty productive. She is doing clearance 3-4 times a day...along with me doing manual chest PT when I hear her rattling. I can't hear anything with the stethoscope, but I miss a lot. In fact, the pediatrician often misses stuff. Her pulmo is great, and can hear just about anything, he also triple checks anything he hears, even if he's not sure what it is. I'm just so tired of this. I'm tired of being scared. I'm tired of not knowing what to do. I'm tired of not having a plan. I feel better with a plan. It's just impossible to plan for something you don't know it is.

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

Long Night...

As I sort of suspected, but didn't want to believe...the extended fabulous period was most likely due to the prednisone effect. Mariella started "the cough" right at suppertime last night. Intermittent, but after all these years, I was fairly sure where it was going. By bedtime, she had asked for a treatment. I listened to her heavy breathing all night long. Of course, as is usual, she sleeps through it all (not well, she's restless as anything, but she's sleeping) I lay up, listening to her. As a result, we are both exhausted.

I'm not adding any of her "sick" protocol yet. I need to see where it goes from here. If it was just a bad night, then it was just a bad night, and we move on. If she totally craps out again...then we'll go from there. I'm hoping it was just a bad night.

Furthermore, she had a bunch or really good eating days...where I actually had to STOP her from eating, so that she wouldn't upset her stomach from overtaxing it...and this morning, she didn't eat anything. I'm hoping THAT isn't a trend.

One whole week...

We've gone one entire week with NO rescue. She isn't COUGH free, and she still complains of tightness occasionally, but when I ask if she needs a treatment, she always says no.

Her current treatment protocol is:

Symbicort: 2 puffs BID

Atrovent: 2 Puffs TID

QVar: 2 puffs BID

Prevacid: 15 mg BID

Align: 1 capsule every day

It appears to be working for right now. She is also one week off the prednisone, I'm not sure if that's why she's doing so great, but I'm not going to question it too much. Here's hoping for a nice long stretch of good breathing and open lungs.

Asthma Education Patch

Today was "asthma education patch" day at Girl Scouts. I think it went really well. It's kind of hard to "dumb it down" to a 6 and 7 year old level...but I think I did ok.

First, we talked about what Asthma is. Quite a few of the girls knew someone who has it, and a couple of the other girls in the troop also had asthma. (they were preemie twins, and have basically outgrown their lung issues. I'll bet they are still reactive, though)

Then, the girls got to play with straws with wrappers. They blew the paper off of the straws to show "working airways." Then they all squeezed the end of the straw and tried to breathe through it. This kind of showed them how the "tubes" in the lungs get tight when someone is having trouble with asthma.

After that, we talked about all of Mariella's stuff on the table. We talked about the fact that if Mariella is coughing and coughing and coughing that it doesn't mean she is SICK, and that she can't get THEM sick. We said that the machine wasn't anything to be scared of, and it just meant that Mariella was getting the medicine she needs to help her lungs work the right way, and that she will always be fine after she gets the medicine. We also talked about the ways we can keep ourselves healthy, and therefore helping to keep people like Mariella, with asthma, to stay healthy. (eating good foods, washing hands, coughing into their elbows...etc)

We covered that asthma isn't always coughing or wheezing. That some people have both, or just one...I was wheezing toward the end of the meeting, so they all got to hear a good wheeze. Mariella told them that sometimes she doesn't cough OR wheeze, that sometimes her chest just hurts or feels tight, and that's asthma too. That you can't always SEE that she's having trouble. We discussed that if the girls saw someone having trouble breathing, or if a friend told them that they were having trouble breathing, that they should always get an adult to help.

Finally, all the girls got to check their O2 level. Mariella got all excited about her 97% reading. Most girls were 99 or 100, and we talked about how different people had different numbers, and that it wasn't like a test.

I sent them home with pictures of lungs to color, and that was it. Hopefully, if Mariella needs a treatment or puffer at Scouts now, they won't be afraid. (or as they get older, if they go on a campout or other event, too) the 2 mom's that were there to help out told me I did a good job and kept it at their level...so I hope they got something out of it.

Memorial Day Bash, Parades and Teaching!

We had a 2 day long Memorial Weekend barbecue. It was nice to see old friends, make new ones, and just have a good day in general. I made sure to pre-treat Mariella before the fire...but she DID wake up tight and icky the next day.

One of my friends noticed the bluish hue to her nails, so at least I'm no longer the only one in the world who has seen it. I didn't grab her O2 level...because, I go into "fix the blue" mode. I know, I know...it's WHY we have the O2 monitor...I promise to be better next time. I think I need to role play or something, so I don't brain fart what I'm supposed to do.

Today, the girls walked in our town's Memorial Day Parade. They are both Girl Scouts, so they walked with their troop. I was GOING to bring the stroller...BUT, Mariella is SIX, and really too old to be riding in the stroller. However, the leader brought a wagon. Mariella did get tight, and asked for a treatment. (it was very warm, and starting to get humid.) So she was able to ride in the wagon for a few minutes while she did her treatment. She actually probably could have walked and nebbed..but since we had access to the wagon...we used it.

I had approached the leader last week about running a meeting to work on an asthma awareness badge that I had found on the Girl Scout website. She was ok with it, and did run it by the parents to see if they objected. Nobody did. One of her fellow Daisy scouts was a little freaked out and worried about Mariella when she was doing her neb, and we explained that sometimes Mariella's lungs didn't work the way they were supposed to, and that the machine put medicine in her lungs to help her...so I think a meeting on awareness is very appropriate. My thinking behind it was that if she is in the troop with them for any length of time, the chances are they will see her needing her puffer or a treatment. They need to know that she is going to be ok, and maybe more importantly, she can't make THEM sick.

I've printed off all my materials, and I'm going to look through them. I'm going to bring her nebulizer machine and her O2 monitor and let them look at them, check their O2...I'll bring my stethoscope, and show them how I listen to her lungs, I'll bring her puffers to show them her medicine. I've already asked Mariella if it's ok for me to talk about her.

I'll let you know how it goes when we're all done. I'm kind of excited about it.

Overnight musings....

So, I've been rolling the cardiology appointment around in my mind. I'm like that...I process things over and over again. I'm fully satisfied that Mariella has no cardiac issues. That is not on the table, and totally off my mind. I didn't realize how relieved that it would make me feel, since I didn't consciously think there was an issue.

In the conversation about Mariella's history, a funny exchange happened. The doctor was telling me what he had read, and how he had understood it...and said "I'm missing something about the belly...I read something, and I can't remember what it is." I replied, "she has some gastroparesis...but Dr. Goode doesn't call it that, Dr. Duda does...but not Dr. Goode." He looked a little surprised, and said, "Dr. Goode DOES call it that....that's exactly what I was forgetting."

So it makes me wonder...why did Dr. Goode tell me it wasn't gastroparesis. Dr. Duda told me her percentage...I can't remember off the top of my head what it was...but it was definitely slower than normal, so I call it that. Was she just trying not to worry me? I don't know. We DID talk about the possibility of treating her slow tummy...and we both decided that at the time, it wasn't necessary, so she does agree that it's slower than normal. I always thought that perhaps as a gastro, she had a different definition of "gastroparesis" that maybe it had to be slower than what Mariella's tummy is to make the actual diagnosis.

Also, the cardiologist was taking about her tummy and lungs being connected. Dr. Goode sees no evidence of such, BUT...most of Mariella's tests are inconclusive. They show that there is damage to her lungs, they show damage to her esophagus, they show a slow tummy...but the problem is that we haven't found an effective method to treat them. (as much as I would LOVE a test to say "this is the problem" and have a doctor say "I know how to fix that" I'm appreciative that the tests show SOMETHING...otherwise, I'm pretty sure I would have been arrested for Münchhausen by Proxy. I know I FEEL crazy half the time)

As I type, I think I can confidently say that Mariella has turned the corner. She has a little more energy. She isn't using her accessory muscles to help her breathe anymore. (it was quite obvious yesterday, the doctor mentioned it.) She isn't breathing between words, and giggling isn't sending her into gasping breaths or uncontrolled coughing. (and Mariella is a giggler...the smallest thing in the world sets her off) When she SINGS, she is still gasping a bit...which she doesn't normally...but I'll wager that by tomorrow, she'll be a whole lot clearer. I'm not hearing the grossness in her lungs, and she's bringing up the more normal amount when she uses the acapella. (I know...there probably shouldn't be anything when she does it...but there is) I think I'll let her graduate down to 2 times a day again.

This weekend is Rob's big Memorial Day Barbeque 2 day event. (oh, yay.../sarcasm) So most of the day will be outside. I'm hoping it's not going to be gross out. Should I pretreat Mariella before we light the firepit?

Cardiology update

Well...Mariella has a heart. A fully normally functioning heart. We started the appointment with an EKG...and that had all the appropriate spikes and valleys and other things. Then, a doctor came in and spoke with us. I was SUPER impressed that he had read Mariella's 4 inch thick chart. He did a basic exam...then his supervisor (the "real" cardiologist) came in. (I believe he was a doctor who was changing specialties.) I also really, really liked the real cardiologist. He was thorough, he took the time to talk to me, and answered all my questions. He had also read the chart, and was very well versed on Mariella's journey. He also did a very thorough physical exam...listening to all the major pulse points on the body.

He was very convinced that there was no issue at all, but he also had Mariella have an echocardiogram. He was funny. He said, "It's not for me...I don't think the blue period is cardiac. It's not even for YOU, since you don't think the blue periods are cardiac...but if I do a cardiology exam without the echo...Dr. Duda and Dr. Goode are going to ask...'where's the echo?'"

So, off to the echo room we went. There was a really cool mural in that room, two walls worth, and within the mural, there were hidden pictures. Mariella and I had a good time trying to find them, and then it was time for the ultrasound. She took about a gazillion pictures, we got to hear her heartbeat. (kind of cool, since the last time I heard her heartbeat on an ultrasound, she was in utero. It's actually the same whoosh whoosh sound, but slightly slower.) She also printed out two of the images for Mariella to bring home. I don't know how to work the scanner, but as soon as I figure it out, I'll scan them.

Our appointment was at ten of eleven...the doc was running about 10 minutes late, and we got out of there just after 12:30...so it was a nice long appointment. No real answers, but we really weren't expecting any. If we found cardiac issues, it would have ADDED an issue, not answered any questions, so I went into this appointment praying for it to show nothing.

Afterward, Mariella and I had a lunch date, and went to Target for her prize. Yes, I reward my child for good, compliant, cooperative behavior at the doctors office. Sometimes, she gets BIG prizes, other times, she gets small prizes. However, when you get told by 5 or 6 different people how well behaved your child is, and how good she does at the doctors, I think it deserves a "Littlest Pet Shop" set. AND, even better...she got a day off of school.

On the respiratory front, the pred seems to be beginning to work it's magic. She's still coughing, and complaining of feeling tight...but she's not as junky. She hasn't graduated to doing the acapella twice a day, she still has to do it 3 times a day. If on Tuesday, she's still feeling poorly, or if she goes south over the weekend, I'll get her squeezed in. (if I'm really unhappy on Monday, I might be able to get the pedi to order a chest series. I won't ask them to see her, since they can't ever hear anything anyway.) The pred is making her super sensitive...so we're fielding all sorts of tears and stuff, for any and all slights, real and imagined...but it could be rages...so I'll go with supersensitive, crybaby girl.

So, that's all from here. I have photographic evidence that my youngest has a heart. Along with the MRI from when she was 2 that shows she has a brain...we're all good.

fly by posting....

Mariella had to start pred...we followed sick plan, and she didn't get better...her lungs sound like they are full of junk...acapella brings all that junk UP. Her cough is gross.

Cardiology tomorrow. I have no idea how long this thing will take...it could be quick..."nope, nothing going on here" or it could be a long, thorough appointment...(that ends with "nope, nothing going on here)

I've already told everyone who needs to know that she probably won't be at school. I can't WAIT to see the total tally of absences and tardies on the end of the year report card.

So, we all have our challenges, right....

This blog is mainly about Mariella and our challenges with her asthma and her tummy "issue". I do have an older daughter as well. I'd love to say that her life goes along swimmingly, with no problems...but I'd be a liar if I did. We're in a nice, stable patch with her right now...but I thought I'd take the opportunity to tell a little bit of her story.

Abigayle was born in 2000. She was a month early, due to the fact that I was toxemic. I basically skipped right over pre-eclampsia and went straight to the doctor saying, "I'm surprised you're not seizing already." Due to my Gestational Diabetes, she was still a big baby (over 7 lbs) but she lost almost 2 lbs in the hospital before she came home. She behaved in the manner of most preemies. She was sleepy, she didn't feed well, and she was cold all the time, but we got through it.

She was a good baby. Other than her little blip of RSV, where she spent 12 days in PICU, she was a healthy baby. She still has reactive airways, but it's manageable.

Abby's struggles are a little harder to define. At about 18 months old, we started realizing that her tantrums were coming far more often than a "typical child" By the time she was three, she was having tantrums upwards of 20 times a day. Some would pass relatively quickly, others lasted for hours. They often were about things as minor as the fact that I gave her the wrong purple cup...even if the purple cup I gave her was IDENTICAL to the cup she wanted.

She also stopped sleeping. She would be messing around her room until 2 or 3 in the morning, and then be up for the day at 6AM. We were all exhausted. I finally brought her to the doctor and asked, no, BEGGED them to fix her. She started on Clonidine at that point, and it was wonderful...for the first time in a long time, she was sleeping. It didn't help the tantrums, or the defiance, or the other behavior issues...but at least I wasn't so sleep deprived that it was IMPOSSIBLE to deal with them. It was still DIFFICULT to deal with them, but not impossible.

We started to just give in to whatever she wanted...anything to avoid a tantrum, or a rage. She went from being a sweet, cuddly, loving little girl to a child who was prickly, angry, and distant. We began seeing a therapist, who was basically useless. She would send us out to the waiting room, and then not tell us what was happening in the session. I'm all about confidentiality in therapy...for teens and adults...NOT a three year old. We left that therapist, and muddled through for a while, until we began seeing another therapist. This was a behavioral psychologist, and the therapy was as much for me as it was for her. He taught me tools to deal with the rages and the anger and the defiance. He also realized that she was beyond his scope, and that she most likely needed medication. A scary, scary thought when your child isn't yet 5.

He helped us find a child psychiatrist who would probably be willing to prescribe medication for such a young child. We met with her, and we talked about all the possibilities. In young children, many of the psychiatric illnesses look the same. It was terrifying to hear things like "pediatric bipolar disorder" and "very early onset schizophrenia" along with the more "typical" diagnosis, like Oppositional Defiance Disorder and depression, and Autism.

Because I was diagnosed with depression in college, and when going over my history, the doctor mentioned that I probably should have been medicated when I was two...and the fact that Abby is a carbon copy of me at that age...we were pretty confident that we were looking at depression and anxiety. We made the decision to treat her with Zoloft. Within a month, things looked SO much better. She was still a challenge, and she still had rages and tantrums, but the severity and the sheer number of them went down. (It's important to note that Abby's first words were "Hi, Dada" into a pretend phone, at just over 6 months of age. Communication, or lack there of were never at the root of her tantrums...though, lack of ability to communicate are the typical cause of toddler tantrums)

In those early days, we still had real, scary things to deal with. When Mariella was about two weeks old, I came out of the bathroom to find Abby with a pillow over the baby's face. When I asked her what she was doing, she looked at me, and said, "I'm trying to kill the baby." There was also the time when she asked me something, and my answer was "not right now...in couple minutes" and she looked at me and said "I'm so sad with you, I'm going to cut myself into a million pieces." So, I didn't go to the bathroom alone for almost 2 years, and all the knives, including butter knives, were stored on top of the refrigerator.

Things a so much better now. I always know when she's due for a med adjustment...she gets more irritable, more defiant, and rages more easily. These times are fewer and farther between, as she isn't growing quite as fast as she was as a toddler and preschooler.

She was also diagnosed with ADHD at about this time, but we chose not to treat the ADHD at that time. It was hard enough to make the decision to start an antidepressant, I just couldn't start a stimulant at the same time. She did OK in preschool, she had a horrible teacher in kindergarten, but first and second grade were also pretty good. In third grade, she started to really have trouble, so we made the decision to begin ADDerall, and it's one of those times when I feel like kicking myself, and start waiting for the "Bad Mom of the Year" award to be brought to my house. She is doing so well on the new med.

We still see some 'red flag' behaviors, and I still wouldn't be surprised if at sometime Abby is given a spectrum diagnosis. If she does fall on the spectrum, she is high on the spectrum, and is functioning well enough. She has a plethora of sensory integration issues, tactile defensiveness, and other such things. She struggles socially. Her psychiatrist said those things can also be attributed to the fact that she is gifted, so really who knows. A diagnosis won't change anything...and we won't persue it, unless we have to.

She thrives in school. She craves the structure that school gives to her. She flounders at home on weekends and vacations. I try to structure our day, but it just isn't possible to do so to the extent that she would like. It makes it difficult sometimes, be we handle it.

Abby comes by many of her issues honestly. As I said, I was diagnosed with depression when I was in college. I was diagnosed with ADHD at the same time. There is a diagnostic tool call the Adult Connor's Scale, and I answered every question appropriately for ADHD. The doctor looked at me and said..."you graduated from high school....REALLY?...HOW?" According to him, I was one of the most severely affected adults with ADHD that he had ever met. I have always opted not to be treated, because, well..."I've functioned well enough so far." Though, according to Abby's psychiatrist, I'm not functioning "well enough." So I went to the doctor yesterday, and will be starting ADDerall tomorrow morning. We decided that it works so well for Abby, and she is so like me, that it will probably work well for me. I'm hopeful, and I'll let you know how it all goes.

Dance Recital Day

In the midst of all that is NOT normal in our lives, the girls do something that is VERY normal. They each take a dance class. Abby takes tap, and Mariella took a ballet/tap combo class this year. So, after a season of schlepping to the studio two days a week, today was recital day.

I'm beyond thrilled at how the studio chose to handle the recital this year. In years past, all the girls who were not in a combo class (combo classes are the very youngest of the dancers) danced in two shows. The first year Abby was old enough to have to do that, it was no big deal, the shows were on two different days, and we just had family out on the day of the show they both danced in. Last year, however, the two shows were on the same day, and each show was pushing 3 hours...with barely an hour between the shows in which I had to try and shove a Wendy's burger down Abby's gullet. Apparently, I was not the only parent who complained about the debacle, because they didn't have the girls dancing in two shows this year (because, really...why was it necessary?)

They did wonderfully. Abby took a tap class, and they danced to the Happy Day's theme song.

Mariella danced to "A Tea Party Ballet" Her little class sang along as they danced. It was totally adorable. She did great. I was a little concerned about her breathing, because I don't get to hang out back stage with them...and she asked me to bring her neb, but I told the adult in charge of them where we were sitting, and said if she asks for it, to come and get me. I had also dosed her before we left, and didn't think she would have too much trouble. She didn't until we got in the car...but I think it had a lot to do with the jumping up and down and general crazyness of the finale.

Both sets of grandparents were able to come, and we went out for delicious German food afterward. We got home, and the girls did some crafts with Grammy, and watched Empire Strikes Back with daddy...then it was time for treatments and bed.

As much as we all love dance, I think the girls are as relieved as I am when the season ends. There is time to hang out, and not rush these couple days a week now. Abby will be taking Ballet next year, and Mariella is taking "whatever Mr. David teaches" He is her favorite teacher, and she wasn't able to be in his class this year...so she is looking forward to being in his class again.

An apology in advance for a whiny post

Now that we've got the O2 monitor, and I've got a spreadsheet of her levels and rescue, either by MDI or nebulizer, I was able to see that Mariella has needed 7 albuterol or Xop doses in 7 days. Not one a day, so there have been days that she needs more than one.

So, now that I have it in black and white...it's a bit easier to say..."wow, it's time to implement the sick plan...for some reason, her lungs are PISSED." It's also just HARDER to see it in black and white. I know I "forget" how many treatments we really do...when we do them so often.

So, my spreadsheet has her pre and post treatment (if needed) O2 levels, as well as a notation as to why she needed a treatment. I am basically giving a rescue treatment for any O2 level of 93% or below. It's not the protocol I've been given...her doc didn't really give me one...She's never really had low O2 in the office when we're there. Even when she was completely occluded, she was satting at 99 or 100%. I don't think he really expected to see low readings. We see nice high ones too...98, 99, 100%. Sometimes, she's got a nice high O2 reading, but she's feeling short of breath, or her chest hurts, or she's coughing...and those get a notation. I always check her O2 after a treatment as well.

We started "sick plan" tonight. Her cough has gotten steadily worse since Tuesday, when she ended up in the nurses office for her Xop. At that point, she was just tight, according to the nurse. She was not coughing over night, but did start as soon as she woke up, and asked for a treatment on Wednesday. By today, her cough is junky and gross...she is bringing up grossness after her acapella. (which of course is good, that's the point of airway clearance) It's not colored...just gross. I don't want to, but I might just keep her home tomorrow. She's coughing in her sleep, which means she won't be well rested, and they already complain about her distractedness...which will be worse if she's tired.

Tomorrow we're heading to the financial counselor at the hospital, to see what Mariella qualifies for, regarding MassHealth. It's just so expensive keeping her in medication.

I'll also be calling her pulmonologist, to let him know we've started sick plan, and to see if he thinks he needs to see her. He usually does not, though...he trusts me to administer the medication, and to call if she goes south.

This place called the Internet

I am blown away. When I posted my fundraising link on my blog, and on the boards I frequent, I really didn't think that I would get any donations from them...but I felt like I needed to throw the opportunity to donate out there. No one can imagine my surprise when I realized that almost HALF of the money I raised came from people that, though I consider them friends, I will most likely never meet them in person.

That is an AWESOME thought. This "place" called the internet...it is really beyond comprehension to me. That 2 of my friends can take their inhalers together, 10 thousand miles away. That a person that I've never met, yet known for 10 years cares enough about me and my daughter, and a cause that I believe in, to donate more money than my parents did. Nothing against my parents, they donated what they could afford to donate, and that's great...they didn't have to donate anything. It just shows the scope of these friendships that I have built over the years. (and in just a few months)

I started this blog on a whim. I was feeling as low as I've ever felt...and in the matter of a few months, I feel like I've become part of a community. Like the boards that I am a part of, this community designed for a specific reason (in the case of the blog, because of asthma) it becomes so much more. I spent all weekend waiting to hear about one persons daughter's play, I keep track of another friends tweets about the different things she sees as she walks around her neighborhood.

It's kind of funny...when I talk about a friend, sometimes my mother will ask...is this a local friend, or a global friend. That's kind of a neat thought...I have friends all over the world.

To all my friends who donated, and those who would have liked to, but it just isn't possible...For all my friends who were cheering me and the girls on from afar....I felt your support. I'm sure we'll be doing it all again next year, it was a great time.

Without the internet, none of this would be possible.

Great Strides!!!

The girls and I walked for the Great Strides walk today. There is a 3 mile option and a 6 mile option. We did the 3 mile option.

Abby walked the entire way without complaint...I was super proud of her. Mariella walked at least 3/4 of the walk on her own. There were 2 HUGE hills that I carried her up...and one of our friends and I stopped off to get iced coffees for the group, and Mariella stayed with us...so to catch up to the group...Jeff gave her a little lift...but just because she has short legs, so she doesn't move as fast.

By the end of the three miles, Mariella was starting to need to take breaths between words again (it's not all the time, I've noticed...most of the time, she DOESN'T do it. ) She was afraid we weren't going to walk if she was having trouble...so she kept telling me she was fine.

We got to the picnic at the end, and she was huffing a little bit...but it wasn't until she started coughing that she realized that she needed her rescue. She started out asking for her puffer, then thought about it and said..."nope, I need my neb...you brought it, right?" Of course, I had...so she was good in a couple of minutes. Yet again...THANK YOU, Pari Trek. Her Xop MDI would have helped too, but she would have needed a treatment when we got home...or another couple puffs of the MDI, since we didn't go right home.

I didn't hear the how much was raised today...I raised over my goal (though I did aim low) I'm proud of how I did.

Right now, Mariella is hanging out on the couch, I'll be surprised it she makes it past 7. Abby's in the shower....she's beat too, but she wants to wait up for daddy to come home from his weekend away.

There is a bliss in the unknown...

We're "spot checking" Mariella's O2 now. Basically, I'm shooting for morning, mid dayish, and then bedtime. Mid day on school days will be after school.

This morning, we got up and did her check. She scored a whopping 79%. That's like SCARY low. I got her on the neb real quick, and her post neb level was back up to 100%. But that scary low, right after she got up...makes me wonder now whether she is desatting during the night, and I don't know it. We didn't keep the snazzy sticker things that will stay on her finger all night...so I really have no way of monitoring her all night...nor can I sit up and watch a monitor all night, really.

I think this is one of those times when the saying "Ignorance is Bliss" really applies. It's not that I don't WANT to know, or think I don't NEED to know that she's desatting like that...but when I DIDN'T know, I could pretend that it wasn't happening.

I asked her how she was FEELING...she said she was a little tight, and that she felt like she had been spinning around. I'm going to have to make sure that we ask her how she is feeling...so that she can put a name on the feeling, so that she can articulate what she's feeling.

I've been paying closer attention to her as she talks, to see how much of a sentence she says without breathing...She needs to take a breath every 3rd of 4th word...For example, when she was telling me about going to the gym to see the art show being set up, went something like this...Mrs H brought (breath) us to the gym (breath) to see the (breath) art show set up. I got to see my (breath) picture on the wall. (huge breath) What I DON'T know is, is this a HABIT that she's developed over time, or does she really need to breath that often when talking. Or maybe it's a little bit of both. Just one more thing to wonder about and keep an eye on.

One final note, I'm walking on Sunday to raise money for Cystic Fibrosis research. I'm excited about it. I hope that I'm breathing well enough to do it, and I definitely hope Mariella is breathing well enough to do it. I'll throw the Pari in the car, and keep a puffer with me, and hopefully, it's not going to be too bad.

We're beginning to look like a doctor's office around here

We have nebulizers, and airway clearance devices and now we have a pulse oximeter.

The RT came to do the training today. I didn't think it was all that hard, but I'm sure in order for insurance to cover it, they needed to do the in-home training.

We plugged it in, and tested it out on me. I'm satting at about 96%. Not great, but it doesn't set the alarm off. I used my inhaler as soon as we were done with the training. The other funny thing is that my resting heart rate is about 54. The alarm goes off at 59...I'm not sure what the top level is...I have a hard time getting my heart rate up when I'm working out, even.

Mariella is kind of excited that it's coming today. She asked me why I wasn't working this morning, and I told her it was because I had to be here when her pulse oximeter came. I'm sure she's going to want to try it as soon as she gets home.

It just occurred to me, traveling with all this equipment is going to be a PITA. I wonder if carry on restrictions are different if you are transporting medical equipment? I guess I'll have to call the airline and find out. The pulse oximeter isn't huge, and the PARI is small and compact...I guess I'll have to get a bag that will hold them both...that and my laptop are my items, I guess.

Getting Called on the Carpet

Yet again, I've had one of my daughter's doctors reprimand me for not taking care of myself. I've been tight for a couple weeks (a month, maybe more) not tight enough that I feel like I need to make a doctor's appointment for it, but enough that I need to use some sort of rescue more than I should.

Abby had an appointment with the allergy doc, who is also her asthma specialist (he is NOT a pulmonologist) and during the appointment, she said..."Momma, how about if you ask THIS doctor to give you medicine for your breathing." He looked at me, and I told Abby that we were here for HER, not me. He asked how often I used albuterol. It's awfully embarrassing to answer that question. I KNOW I'm not under control. I KNOW I could be better controlled. Heck, I know I SHOULD be better controlled. Our med regime for all of us is expensive. I DON'T flare like Mariella does. I don't flare all the time, but when I do...it's typically BAD, like in my doctor threatens inpatient regularly. I'm also horrible at med compliance...I'm pretty sure I've forgotten to take the 2 pills I take every day. I'll have to check...I HAVE to use a daily pill organizer, so that I can check if I've taken them or not. I have a hard time justifying paying for medication that I will likely forget to take.

ANYWAY...a couple months ago, Abby's psychiatrist asked when I was going to get myself treated for MY ADHD. She was very stern, and I felt like a kid called to the principal's office.

TODAY, Dr. Walker asked how many times I used my inhaler a week, and my answer was "you really don't want to know" He asked if it was more than twice a week...and I said, yes...he then asked if it was more than once a day....and I sort of looked down, and he raised his eyebrows at me, and told me I had to take care of myself.

I have to go to the hospital and see if the girls qualify for MassHealth. If they do, I'll totally go and get back on controller meds. That will be my job for this week.

I've been slowly learning to take care of myself. I spend SO much time taking care of other people, it's not surprising that I have a hard time putting myself on the list. I can't be the only one out there that does this, am I?

Happy Mother's Day...

For all the mothers in the world, whether by birth or adoption. For those who never met their babies, or held them only for a short time. For those whose babies are yet to be...Happy Mother's Day to you all.

"Momma...am I the only one who needs all this medicine?"

That was the question that was posed this morning when we were doing her inhalers this morning.

It's a tough one. No, she's not the only one who has to take all this medicine...but she IS the only one she knows who does. She's the only one in her class who has to go to the nurse to get an inhaler at lunch time.

On a positive note, my parents finally really GET IT. They are taking the girls for a week this summer, and made some plans expressly because of Mariella's lung issues. It's a far cry from 2 years ago, when my father called and said "she hasn't needed her inhalers at ALL, but we're going hiking and I can't remember which one we need to bring with us." He didn't get that the controller inhalers needed to be used every day, even if she was fine.

I'm pretty sure I have the only child in the world who gets excited over durable medical equipment. Our PARI Trek was delivered yesterday, so I had it plugged in, charging, when they got home from school. Mariella asked what it was, and when I told her, she said, "Gee, I'm breathing pretty good right now...but MAN, I want to try THAT!" I can't wait to see what she says about the pulse oximeter.

All is quiet, for now. She was a little junky earlier this evening, but she did her airway clearance, and got a good cough going, and it really moved stuff around. I didn't grab my stethoscope to take a listen, but the cough was really wet. I'm hoping that it's not a good flare starting, and just some junk...but, as always, we're keeping a close eye on her.

Balance!

My Blogger friend, Amy (http://www.theasthmamom.com/) has talked a lot about "balance" on her blog. The balance between being a hovering, over-protective asthma parent, and letting the "asthma kid" live as normal a life as they can. (which, for all intents and purposes SHOULD be completely normal, aside from the need for some medication) I'll admit, I read all her posts about balance with such attention, I practically take notes.

Balance is something I struggle with. I am fortunate, because Mariella is GENERALLY fairly good at "policing" her own lung status. She understands the feeling of having a tight chest, and knows that getting her rescue inhaler will help that. She knows that if she is coughing and can't stop, that her rescue inhaler should help that. She isn't as proactive at treating a cough as she should be, but...hey, she's SIX. If the teacher says, "you're coughing a lot...go see the nurse." She goes. If I say, "you're coughing like crazy...do you want a puff or a treatment?" she will think about it and make the appropriate choice.

However, we've added a new symptom...her turning blue, and she doesn't seem to FEEL anything but lethargic. I find myself obsessively checking her fingernails and lips. I KNOW it's not the best thing for me to be doing...for me or for her...but I can't seem to help myself. I need to find my way toward a better balance regarding this. Mariella doesn't need or want me hovering over her, constantly checking her fingernails, and I can't obsess about it. I just worry SO much...especially since she isn't feeling a physical pulmonary symptom that she can identify.

I don't know if I should start keeping a symptom diary. So that I can get a better idea of what is going on when she turns blue. What the weather conditions are like, what she is doing at the time, if she's currently flaring, if she is sick. Perhaps something like that will help me find a better balance. A better way to gauge if I need to check.

I've had several people tell me recently how impressed they are at how I handle Mariella's medical issues. I appreciate their thoughts, and I accept their compliment...but I often feel like a fraud. I don't feel like I'm handling it well at all. I'm angry a lot, I'm sad a lot. I cry all the time. I grieve the childhood that Mariella is missing. I grieve the attention and childhood that Abigayle is missing too. She shouldn't have to "fend for herself" as often as she does. She is nine, not 19. She should have her momma's attention too. Again, with the balance thing. How do I balance the needs of my chronically ill child, and my healthy(ish) child. Of course, if she is sick, she gets my undivided attention...but she should be able to get that all the time. I TRY...but it always seems that my time and attention is skewed to the Mariella side, and the Abigayle side gets shafted.

I wish I knew the answer. I wish I knew how to find balance in everything in my life. I'm working on it, and hopefully, I'll find it (or at least something close)

Yesterday was World Asthma Day

I fully intended to post YESTERDAY...however, at 4:30 PM, a tree took out the power lines on our street, and fully blocked one side of out street...SO, there was no internet access, and therefore, no posting. We finally got power back at 5AM...and thankfully, it was a quiet night...I'll admit, I panicked a bit at bedtime, when it occurred to me that I wouldn't be able to neb Mariella, should she need it. We DO have MDI rescue meds, though...so it wouldn't have been a panic situation.

The girls and I wore our World Asthma Day shirts yesterday...even though I worked, and I'm not supposed to wear Tshirts, I did anyway. Abby told all her friends about why she was wearing her shirt. She found out that several of her friends have asthma. Mariella also told everyone...and thought it was hilarious that they all said "Really, I didn't know there was such THING as World Asthma Day."

It's amazing how many people don't realize that people "still" DIE from Asthma. Of course, it's "ONLY" about 3600 people a year...but again, I'm unsure why ANY deaths from a largely controllable disease is acceptable. I'm not sure why it's acceptable that 10.2 million children suffer from from a disease that should barely be a blip on their reality. Why it's acceptable that over 8 million dollars are spent every year on treating asthma, which is LESS than the 10 million dollars of indirect costs of absenteeism, from work and school.

The incidence of asthma in children is rising steadily. I'm not sure if it's because it's better diagnosing is taking place, or if there are just more children that are being afflicted. In my personal experience, it took well over 7 years to be diagnosed with asthma, though I was treated for "chronic bronchitis" for all of those years. Finally, a doctor who was knowledgeable in what was then called "atypical coughing asthma" diagnosed me. It is now more well known that asthma isn't just wheezing. There are other symptoms to be looked at...things like coughing, shortness of breath, or pain of a tight feeling in the chest. As more doctors become aware of these other symptoms, more children are being diagnosed.

I'll admit, I have a personal stake in more research, in better treatments for asthma. My 6 year old daughter takes 3 different inhalers every day. Each inhaler is prescribed in adult dosages, because the appropriate pediatric treatments have proven not to work for her. At least one of the medications has a warning regarding increased risk of asthma related death. (of course, uncontrolled asthma also carries a risk of asthma related death.) There needs to be more research in the connection between gastro symptoms and asthma symptoms.

Finally...the next person that I hear say..."well, it's JUST asthma..." I'm going to kick them. I heard it the other day, when I was giving Mariella a rescue puff, because she was blue. A person who I don't know said..."well, at least it's just asthma...once you give her that inhaler, she'll be fine." Unfortunately, we were at a church camp open house, and really, they kind of frown on kicking strangers.

Pulmo Appt. Update

Mariella's lung function is great...so that's fabulous. She IS growing...she gained 2 lbs in 6 months. Kids are "supposed" to gain about 10 grams a day...if we JUST look at from her last appt. 6 months ago...she's gained about 5 grams a day. It's still too slow, it still shows malabsorbtion...BUT...I'll take ANY gain. So YAY

Let's see...No answers about why we can't get the coughing under control, or why she gets a tight chest or short of breath so often. Her oxygen was lower today than normal, but not at panic level.

We talked about her getting dusky and blue...I have to get a oxygen monitor, to get a number when that happens. We also got a referral to the cardiologist...to make sure that it's not an ADDITIONAL issue that we're overlooking, because it's very easy to say "oh, she's turning blue, it must be her lungs"

We have another referral to a DIFFERENT program in boston, at a different hospital. It's one that my friend speaks SO highly about...and basically, Dr. D doesn't know where else to go...I'm a little nervous about it, because it may or may mot involve more tests, and I'm just not sure where I am going to draw the line. I know what I WON'T do...no more endoscopies, or colonoscopies...they don't show anything, and she's had enough. I might let them do another bronchoscopy...but I'm not sure. I guess it's just worth talking to them, and finding out what they will say.

I talked to a social worker about getting Mariella on MassHealth as a secondary insurance. AND, when Dr. D heard how much we were spending on meds, he went to the closet and got me 6 weeks worth...and then we're going back...so he'll give me more then.

Dr. D does not use peak flow with the majority of his patients. Especially in kiddos who have stellar PFT's in the office. I have faith that if he thought it was appropriate for Mariella that he would order it.

So, no real answers...but a plan of attack to get there.

Pulmo Appt, Attempt TWO...

We'll try this again on Monday. Her appt time is horrible, 11:30AM. Early enough that it doesn't make sense to send her to school for the morning, and late enough that it won't make sense to bring her afterward. Since she's in kindergarten, after lunch is taken up by rest time, and Centers. So, I guess we'll go to the appointment, then maybe have a mommy daughter lunch afterward.

So, on my list of things to ask him is about PFT's, the blue crap she keeps doing, airway clearance, and what to do about the night coughing, and general lack of control.

I'm just not sure where we can go from here. She's tried and failed SO many medications...She did great on the QVar for about 2 weeks. She was like a new kid. She ran around and played, even my mom commented on how DIFFERENT she was. We got 2 good weeks.

I'll be sure to update after our appointment. Hopefully, we'll have a good plan of action.

UGH, flaring....

and not Mariella this time.

I seem to have hit a wall. I've actually done really well...I didn't flare badly over the winter...just a few times did I need to hit the albuterol after going out in the cold, or whatnot. What's going on right now? Totally different than I've ever experienced before. Totally short of breath, air pocketing, and generally feeling lousy. I've gone to bed at 8:30, 2 nights in a row...and that's SO unlike me. I'm also waking up in the middle of the night, needing an albuterol puff, or 2.

I resorted to Mariella's neb last night, and again this morning. It really does just work better. It's keeping me from needing the puffer every 2 hours...so that's good. (actually, it's been 6 hours, and a gym trip, and I still don't need more)

Sure, I should probably skip the gym when I'm feeling icky...but, I LIKE going to the gym. I only did 10 minutes on the elliptical, rather than trying to do 20...and I did the rest of my cardio on the easier treadmill.

Mariella, on the other hand...is doing pretty well. She hasn't been blue in about 3 days. She still needs her rescue puffer at least once, usually 3 times every day...BUT, she hasn't need a neb overnight in 5 days. Probably a good thing, since I don't know if I'd wake up to give her one.

So, I'm hoping that Mariella doesn't crap out before I get better...no room for 2 flaring people in one house. (and really, I just want to feel better...I don't like this SOB feeling. I can handle the coughing [sort of] but the wheeze and SOB...totally not a fan)

We love the Wii

It's allergy season here in New England (and everywhere else, from what I'm hearing) Abby has seasonal allergies that make her pretty darn miserable. She takes Zyrtec and Flonase every day, but this year, she's suffering more than usual.

This puts a huge cramp in her "I must be outside at all times" style. She WANTS to be outside, but the pollen count is through the roof, and I'm a little concerned with triggering her RAD with the stuffy, nose and post nasal drip. Quite a few of her pneumonia's have been in the spring and the summer, likely triggered by her allergies. I let her go out for a little while, but I'm hesitant to let her spend ALL day out there, though that would make her extremely happy.

Yesterday, after she had been outside for a while, she came in and still had a ton of energy to burn. (It's school vacation week) I had her play Wii Sports for a while...she opted for boxing. After playing for about 20 minutes (and kicking the rears of all her computer opponents) she looked at me and said..."Momma, I'm all sweating, and my heart is beating REALLY fast...is that OK?"

Of course, she still didn't get to sleep until well after 10PM last night, but that was MY fault entirely. I haven't been keeping a good eye on her Clonidine script...so we only had 2 left...I'm not sure the refill will be in before Sunday...and she needs to get sleep before school...I'm not so worried about late nights on vacation...especially since she was IN bed, and reading for that whole time.

She's back on the Wii today...playing Sports Resort...Fencing...she's getting quite a workout with that too.

What keeps her breathing...

These are the medications that keep Mariella breathing. The machine is a compressor for a nebulizer (the plastic cup thing with the snazzy "Bubbles the Fish" mask attached.) Her albuterol rescue medication goes in there, as well as her Pulmicort, when she's sick. Her Prevacid is sitting on top of her compressor. That is for her "GERD" (for lack of a better diagnosis) We hope that by keeping the acidity of her "reflux" down, it might help her lungs. She also has 2 inhalers she uses every day. They are not in actuators, because the spacer we use doesn't need the actuator. The blue puffer is Xopenex. It's also a rescue med, but easier to bring out and about than a nebulizer. The 2 liquid bottles are prednisone, which we keep in the house at all times, and a codeine cough syrup that we also keep in the house at all times. I didn't add the multivitamin or the probiotics that she takes daily.

Mariella takes medication at least 3 times a day. More often when she is flaring. She takes dosages of adult medications that make pharmacists (and insurance companies) call the doctor to verify that what they faxed over was really what they meant. That little bottle of Prevacid, that's supposed to hold 2 weeks worth of pills? We go through them in a week...and will probably start going through 2 a week soon.

Parenting a child with a chronic illness isn't for the faint of heart, that's for sure.