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.

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

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

Just like last year, it was a great time...the children had such a fabulous time, dancing...watching a magician, eating. It appears that we were at least as successful as we were last year. We are searching for a new venue, as we seem to have outgrown the hall we used last year and this year.

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

On the upswing!!!

After a full day of feeling crummy, with a scary high fever to boot. Some Tylenol and a good nights sleep seemed to do a world of good.

Mariella has been eating applesauce, saltines and rice all day. She was a little upset that Abby got pizza for supper, and she didn't, but I told her I would save her a piece for Monday. I'll have to remind Rob not to eat it. Otherwise, we'll have a very unhappy girl.

Tomorrow is the Dance for Dominic! We're so excited, and we're hoping for as good a turnout, and a successful fundraising effort. Mariella was quite worried that she wouldn't be well enough to go...but she seems to be nearly 100%, so she will be there with bells on. I'll post how much we were able to raise, as soon as I know.

I swear, the forces of the universe are out to get me!

It all started at 2AM. The Cough. Up I got, started the neb. I snuggled in bed, and took the backdraft off the nebulizer (you know...a good 2 for one deal)

I got back in to bed and had JUST gotten to the point of sleeping again, when Mariella came RUNNING out of the bedroom, kind of crying that she had to pee really bad. I got up with her, because though she can use the bathroom on her own, she seemed agitated.

Good thing I did, because the next thing she said was, "my belly hurts, I have to throw up!" and before I could get the bowl, she threw up, all over the bathroom floor. Good thing we hated the bathmat, and wanted to replace it anyway.

So, at 3 AM, I was giving her a bath. I wasn't thrilled with how she looked, so I "slept" on her bedroom floor...helping her with the pukes several times. She also needed 2 more nebs in this time. I think we've got a 2fer going on...a tummy bug AND a good asthma flare.

I'm bringing her in to the walk in this morning, because often, the vomiting accompanies an ear infection, and she's running a temp of 101ish.

Of course, we were supposed to see Dr. Duda this afternoon, which of course can't happen now. Hopefully, they can squeeze us in sometime next week, but I don't think they will, I guess we'll just keep that May 3rd appointment.

Thinking Aloud....Things to ask the Pulmo...

1. constant flaring-what can we do?
2. PFT's-probably get her started on those
3. Airway clearance-she is much better when she is compliant...still not great, but better-keep it up, step it up? What do we need to do?
4. Blue periods-why are they happening?
5. Night time coughing? What can we do to get it under control?

Really only 5 things that are pressing...so that's good. I KNOW he's going to yell at me for not going to the ER after her blueish lips and fingernail period. Really, she had pinked back up, she was totally clear...what would they have done? Maybe he'll suggest a pulse ox monitor, or something?

I'm also going to ask him for a script for a new nebulizer, in case I decide to go ahead and get the superfast snazzy one that I've got my eye on.

I subbed at the girl's school yesterday. I was in the kindergarten, but not Mariella's class. I asked the sub for HER class if she was coughing (she had coughed all night, and had asked for a tx before bed) The sub said, "Nope, no coughing...she's really TIRED, though."

I was walking past her classroom to collect my kids from music class, and I heard it...the cough. Most definitely MY kid. I'm pretty sure that because she isn't CONSTANTLY coughing...it's an intermittent wheezy cough...no one realizes it's something to listen for. They probably figure she's just clearing her throat, or whatever. It makes me really glad that she is paying better attention to her lungs...because if I was relying on her teachers to be aware, I don't think they would realize what they were hearing. I asked the paraprofessional in my room if it's a bad thing, that I can identify my kid by cough, from the hallway. She didn't believe that I could. Unfortunately, I wasn't able to prove it...what, with us having to be IN the classroom, not in the hall listening for my kid to cough.

I've got another quiet day, then a busy weekend and school vacation. I'm totally looking forward to that. Abby's mad about it, Mariella isn't totally aware that it's happening. Her teacher plays a game that she "gives them" days off on Friday, depending on how hard they work...so before 3 day weekends, she tells them they've worked SO HARD, that they deserve 3 days off. She's mentioned that if they work really hard this week, she might give them NINE days off. Thankfully, Abby plays along, and hasn't spoiled the game for Mariella. Looking forward to a nice week off.

ARRRRRGH!!!!!!!!!!

I got a call last night. Mariella's Pulmo has to push off her appointment AGAIN...this is the second time. The reason THIS time is that there won't be any RT's in the office to do PFT's. I get that they are important, but she has been mini-flaring almost constantly for about 2 months.

I was able to call the office on a 5 minute break I had today...and she was able to squeeze us in on Friday afternoon. I don't love afternoon appointments, but it's what we can get. Thankfully, Rob can bring Abby to work with him for a little while.

On another note of aggravation, Rob brought Abby's script for her new ADHD meds to the pharmacy...and for some reason, insurance doesn't cover the generic of the 10mg capsules, it only covers the name brand. Of course, because it's a controlled substance, the pharmacy needs a paper copy of the script...no fax allowed. At 3:30pm, there was no way that I could get to the office of the Dr. an hour away to get the script, then get it to the pharmacy. So, poor Abby went to school today without her meds...and she had a crappy day. She has been doing splendidly. I had told her that if she got a smiley face for behavior, that I would give her five dollars toward a book at the bookstore (that is big, HUGE motivation) and she just couldn't hold it together all day. I feel so horrible...but, Rob was able to get the script today, and I'll have it in my hot little hand for the morning, and all will be right with the world.

Looking forward to a quiet day for me tomorrow...I've got a ton to do, so I'm hoping for no sickies, no flares, no nothing.

3 Quiet days...can't I get more than THAT?

I kept Mariella home today. She went to bed early, slept late, and when I woke her up, she cried that she didn't feel very well. That is actually quite unusual behavior for her...still, I told her to get dressed. She started to, without complaint. So, I checked with Rob (I had already agreed to sub today) and he was home all day, so I decided that she should probably stay home.

Her belly was hurting, and her legs were hurting, and she was a little tight. She seems to be starting with a cold again too...so I'm going to implement stage one of her sick plan. We increase airway clearance, and have the Pulmicort on tap, if things progress. I will be so glad to get in to see her pulmo next week.

Hopefully, she'll be able to go to school tomorrow. She wants to go to her sister's dance class in jammies today, and I'm just going to let her. I might make her let me comb her hair first, though.

Things have been quiet

Other than the brief blue period on Monday, things have been really quiet lately. Mariella needs her meds, obviously, and needs her Xop about once a day...but the cough at night isn't the scary cough...she isn't out of control coughing during the day...it's just quiet. I like that.

Her appetite is crap, and we're working on that. I wish I knew how to get her to eat more. I've told her that it's my job to serve her healthy food, and it's her job to eat it...and she knows that...but she spends so much of her time either feeling crummy, or being afraid that she's going to feel badly, that she is afraid to eat. I understand, really I do...but she needs to grow and be healthy and strong.

On a side note...I called our homeowners insurance, and there is no increase in insurance if we get a trampoline...so I think we're going to do that this summer. It's fabulous for lung health, and Abby's psych also encouraged it for Abby's sensory integration issues.

70 degrees and blue lips...don't think she's cold

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

I'm not going to flip out about it...she pinked up. I don't hear any wheezes at all, not even deep in the small airways. We've got an appointment coming up soon, and I'm sure he's going to do a chest series. It's been a while, and I still want to know what's going on in there.

She was totally exhausted tonight too...she barely ate dinner (but she did eat a TON yesterday, so she might still be processing that.) She asked to go to bed, and didn't ask if she could read or anything. Tough to know if it's belly or lungs that are bugging her.

It WAS nice to see her outside on Saturday, running and playing. She was swinging and skipping and playing in a way that we've never seen before. Lately, how she feels has either been FANTABULOUS or craptastic, with little in between. I wish we could get more fantabulous days, because I hate the craptastic ones. OR, if we can't have fantabulous days, I'd settle for not craptastic.

Hopefully, she won't do her blue thing at school, because it's really very subtle...not anything that the teacher would necessarily notice. Stuff like THAT really scares me. That something will happen, and no one will really notice, until she's in crisis mode.

A little bit of a begging post today...

The girls and I typically do the Crop Walk every year. I don't often put my fundraising information out there...because I hate to beg...but, I'm begging for something else this year.

My best friends son has Cystic Fibrosis. It is a disease that affects about 30,000 Americans. Because it's such a rare disease, with not a lot of people affected, it gets very little federal funding for research. People who are diagnosed can expect a life span of about 37 years. Some live longer, and too many die much younger. A CF warrior named Eva Markvoort died last Saturday, waiting for her second lung transplant. (if you want to read an inspiring blog,http://65redroses.livejournal.com/ is a great one...but, be prepared to get lost in it, and have tissues)

We are very, very lucky that D is as healthy as he is. It's attributed to his having a fabulous, proactive care team at his CF center. Hopefully, he can maintain his health, but, CF is a progressive, fatal disease. It is almost guaranteed that Jenn will outlive her son.

It's also personal to me, because Mariella is treated like a CF patient. She doesn't carry the genetics, but her belly and lungs behave exactly as a CF patient's do. Her pulmonary meds are those of a CF patient. Her gastro meds are at a CF patient's dosage. All the research that is done to help patients with CF helps Mariella as well.

I know things are tight this year...and I know that everyone has their own "pet" charities to donate to. I ask that you consider donating something to raising money to research for CF. NINETY CENTS of every dollar goes directly toward research. It is actually one of the best charities out there for efficient use of funds. You don't see the public service announcements on television for CF, like you do for other diseases, because the foundation believes their money is better spent in a lab than on advertisements. It's word of mouth that keeps the foundation in money.

Thanks so much...

www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=6516&idUser=376996

Wear Gray For Asthma Awareness

That's something you don't see. We've got "Go Red For Women" We've got "Wear Blue for Autism" We've got "Wear Green for Organ Donation" The ever popular "Wear Pink for Breast Cancer" I've never ever seen..."Wear gray for Asthma"

Of course...though I'm wearing my blue shirt today...I don't believe that it's raising awareness about anything. If I were wearing a shirt that SAID something about Autism...THEN I think I'd be raising awareness, but just a blue shirt...my husband is wearing a blue shirt right now, and I know it has nothing to do with Autism awareness. Unfortunately, we're all aware of Autism. We're aware of Breast Cancer. Asthma is one of the forgotten diseases. After all, it's "only asthma" I guess it doesn't matter that 11 Americans die every day from asthma and asthma related causes. How many people a day need to die for it to stop being "just" asthma? How many children, mothers, fathers, sisters, brothers need to die before people understand that it's not just a disease where you need a quick puffer, and you'll be fine.

I don't think I'm asking too much. Maybe we need to pick a day where we all wear gray. We can make a FaceBook event...that seemed to get a big response. Maybe May 4th...May is Asthma Awareness month...May 4th is World Asthma Day...maybe we should get something together.