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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.