Archive for the 'flares' Category

LOOOOOOONG night

I had planned to go to bed early. However, after Mariella asked for actual treatments, as opposed to just puffers, 3 times yesterday…I was pretty sure she was going to need them at night, too. It’s worse to me, to go to sleep, only to be awoken at least twice to do treatments. So, I decided to stay up until the first treatment. Then I went to sleep. Only to be awoken 2 hours later to do another treatment…and another 2 hours later. Needless to say, we are both exhausted.

We woke up late, so there was no way to fit all the treatments in before the bus. (2 neb treatments, airway clearance, plus all the stuff we NORMALLY have to do) So I drove her in. I have a feeling we’ll be driving in every day this week.

Hopefully, we get this flare under control before we leave on Friday morning.

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CRAP!!!!

As in “crapping out” Mariella just finished her 4th rescue treatment in 24 hours…I guess I can be happy she didn’t WAKE UP in the middle of the night needing a treatment…but the fact that she needed one before bed, one this morning, her rescue puffer at school, and was asking for a treatment when she got home…basically, she’s on Q4 again. Guess it’s time to implement sick plan fully. Increased airway clearance didn’t keep this one at bay. Should have known.

I’ll also call Dr. D in the morning, just to make sure we don’t want to be more aggressive. (since she’s still coughing AFTER the neb.)

Why this week…REALLY…why? Couldn’t I prepare for what SHOULD be a fun, relaxing long weekend without worrying about what might happen when we’re away. I just want to cry. I KNOW my parents can handle it…I just hate that they are going to HAVE to handle it.

Hmmmmm………

Yesterday, Mariella had a quick, tight cough going on…just one little fit, and then she said she was good…but I gave her a hit of Xop anyway…just to be safe. She didn’t cough all day…(she said) and I didn’t get a note from the nurse stating that she had been to the clinic for a rescue puff. Last NIGHT, though…she coughed enough that I was contemplating nebbing her…then, I fell back to sleep. Mariella is complaining about being “really, really more tired than usual” Which leads me to believe that she didn’t sleep well last night. I’ll give it a day or so before I start the sick plan, since I’m really NOT sure what’s going on…is she starting a flare…or is her reflux kicking up more? (she’s been complaining about volcanoes in her chest again…even on Prevacid 2x’s a day.) More reflux usually means more coughing…which leads to a good flare…but, I really just don’t know what to do. I hate not knowing what to do.

I wonder if we should start using a peak flow meter? How young is too young to use one? Will I have a better handle on what to do with more information, or will I totally freak out more? Definitely something to ask about at our next appointment.

Argh…Parents just don’t understand!!!

M is HOME!!! I LOVE, LOVE, LOVE that my parents are willing to take her for the week, but I am sure glad to get her back when vacation is done.

According to M, Grammy and Grampy were compliant with meds…THAT’S good. She was told to Acapella at least every evening, especially on ski days. She told me that Grampy never gave her the Acapella. However, she IS six now, and should be asking for it, if I’ve told her she needs to.

According to THEM, she didn’t cough at all (I’m not sure I believe it) M said she was a little tight, but didn’t cough. She didn’t tell them because she was afraid they wouldn’t let her play.

The place they go has a great recreation room in the basement. Lots of open space, and it’s really good for running around. I did it when I was a kid, and I’m glad that my girls have been able to play there too. I WISH we had such a great place for her to run around and play.

I get so so so tired of my parents telling me how “great” she does when she is with them. It makes me feel like they think I’m making it all up. I have CT scans of the air pocketing in her lungs. I have X-Rays that show her occluded with mucus from top to bottom of her lungs. It was warm out, so no, her lungs weren’t going to rebel as hard as they might have if it had been freezing cold out. It was rainy and wet…not icy cold. It’s just so flipping frustrating.

My parents also need to learn that M, especially, will rat them out if they don’t tell the complete and honest truth. I KNOW that they did this not to worry me, but they told me that Mariella only “threw up the once” It’s not surprising, really…I’ve been waiting for a good blow for about 3 weeks. She has gone her longest ever without throwing up. M, however, told me she threw up “a couple times.” The jury is still out as to whether or not she TOLD anyone she threw up, or if she just took care of it herself. Two would be fairly normal, more than that, no. It will be curious to see if she flares now. It’s about 50/50, whether or not she flares after an episode.

I can’t believe my father forgot to bring his camera. No skiing pictures this year.

(and, about 25 minutes after I posted this, she started coughing. Somehow, I don’t believe she didn’t cough the whole time she was there. It’s a nice deep cough, not quite barky…so I’ll see where it goes.)

Color me SHOCKED

(whatever color shocked might be)

I went to the pharmacy to get M.’s prescription yesterday. All the hoop jumping worked. The Pharmacist remarked that she has never, ever had to do all this stuff to get a script through before.

I fully expected that it was going to be a high tiered script. I play a game before I pick up new prescriptions, where as I’m walking into the pharmacy, I guess how much the script is going to be. I’m usually right.

I had to pick up a few more things, so I was expecting the final total to be well over $100. I was extremely surprised when it came to less than $30. Despite all the hoops we needed to jump through, M’s new script is a low tier, $10 script. That’s a savings of $50 a month, if the Qvar works for her.

Last night was a bad night. I’m chalking it up to the med switch, and letting her body adjust to it. She is sleeping in my room for the weekend, because we have company, and the company is sleeping in her room. I spent 10 minutes waiting and watching, trying to determine if the cough was from a drip or in her lungs. I decided that a treatment wouldn’t hurt, so I got it set up…(I had planned ahead, and had moved the machine from her room to mine, and had meds ready.) I climbed into the toddler size aerobed…and did her treatment. She was quiet the rest of the night, which confirmed that the cough was lung, rather than drip.

Hopefully, the adjustment is fast, and the new med works.

Since M was diagnosed, before age 2, she has been on
*Flovent (failed)
*advair (failed)
*Atrovent (seems somewhat effective)
*Symbicort (seems somewhat effective)
*Pulmocort (only when she is sick)
*Albuterol neb (rescue)
*Xopenex (rescue inhaler)
and now, Qvar (yet to be determined)

The last time we were at the pulmonologist, he asked how often we used either the rescue inhaler or neb machine. He wasn’t so thrilled when I said “we’re doing really good lately. She doesn’t need rescue more than 4 times a week. Apparently, she is not supposed to need a rescue at all. Go figure…I really HAD thought that an average of 4 times a week was good. Perhaps, eventually, we’ll get her under complete control…until then, we’ll keep trying until we do.

Yeah, I think I’m bitter!

I do try very hard not to be bitter…but as I’m sitting here, listening to M. cough, not more than 2 hours post albuterol neb treatment…I can’t help but feel a little bitter.

I know I’m not the only mom of an asthmatic child out there. I’m fully aware that my child isn’t the only one coughing tonight. I’m sure that there are people at the ER right now with their child, gasping for breath, and coughing…and I thank God that we aren’t there.

BUT…(there’s always a BUT, isn’t there) I get a little tired of people, with their chronically healthy children, who just don’t get it. Who make comments to me when M. is coughing and we’re out and about. The ones who look sideways at me when they overhear me ask…”how’s your tummy…are you going to throw up?”

I tend to make a lot of jokes about M’s health. It gets to the point where, if I don’t laugh about it, I cry. Quite honestly, I’m tired of crying. I’m tired of being scared. I’m tired of trying to figure out how to split myself fairly between my two girls. A always seems to be getting the short end of the stick lately. She’s acting out because she’s feeling neglected. It’s not fair, at all…but I don’t know how to change it. Treating this flare just takes so LONG…15 minutes for a treatment…wait 15 minutes while she does airway clearance…15 more minutes for the next treatment…oh, wait…2 more puffers to do…stop and take a listen…and all this time, poor A is left to ‘fend’ for herself. “Please get yourself into bed, honey…I’ll be up to tuck you in in a little while.” I can’t do that right now, sweetie…I have to finish up treatments…etc”

So, yeah…I’m bitter. I mourn for what I don’t have. Is it small in the grand scheme of things…probably…but it’s my life, and I had a “dream” of what my life, and what my children’s life would be like…and quite honestly, uncontrolled asthma wasn’t part of that plan…so I think I have the right to mourn and grieve every once in a while, and I think I’m entitled to be bitter occasionally.

It is what it is, of course…and I’m trying…really I am. Things are just bad right now, and I’m having a hard time coping. We’ll muddle through…we always do.

And this is why I can’t get a REAL job

Typical…really. I’ve committed to working tomorrow. I can’t call in. So, of course, M. is in distress.

Her cough never really got better with the antibiotic for the sinus infection…it DID sound like it was going deeper. I decided to wait and see what happened when she finished the Zithromax. I wasn’t expecting her to wake up cough free, but I was expecting her to get back to status quo…and not have her asking for treatments.

Today, when she got out of dance, she was coughing rather consistently. (to the point where one mom made a comment to another mom about “keeping sick kids home.”) She asked for a treatment before we even left the studio. I gave her a shower (hoping maybe the steam would open her up) and she coughed all the way through it. She got dressed and said, “Mommy…you forgot to give me a treatment.” I grabbed my trusty stethoscope and gave a listen. At first, I didn’t hear anything unusual…until I went down to the base of her lung…there, clear as a bell, a lovely wheeze.

Which brings me to the original point of the post. Because M. doesn’t typically wheeze, I need to call her pulmo. He will most likely want to see her…which I won’t be able to do. It’s SO hard for me to let Rob take her to pulmo appointments. I can handle him bringing her to the regular pediatrician…but specialist appointments…I have a hard time with it. Hopefully, I’ll be able to keep my phone on tomorrow, so I can at least talk to Donna, and then have her call Rob if Dr. D. thinks he needs to see her.

I’m just so tired of this. Let me slide into being six for a moment, to whine “It’s NOT FAIR!!!” I don’t want to have to worry all the time. I don’t want to have to keep a nebulizer plugged in and at the ready all the time. (oh, I mean 2…I keep one in her bedroom and one in the playroom) I don’t want to have to worry when we fly, because I have to bring machinery on the plane. I want my baby to be able to breathe all the time. I don’t want her to have to know when she needs a treatment. Can we stop this ride, I want to get on a different one.


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