Archive for January, 2010

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.

What has asthma taught me

A question on a blog I follow inspired this post. Every experience in our lives, no matter how long lasting, or how fleeting, teaches us something. We don’t always know what the lesson is…or why it’s important…but there is a lesson, just the same. One of the blogs I follow has “Your Turn Tuesday.” Today, she posed the question…”What has asthma (yours or your child’s) taught you?”

I am asthmatic, but, luckily, I fall under the mild to moderate persistent category. I’m sure that there are life lessons that I’ve learned, but really, the only thing I can think of is that I’ve learned the only way to treat a bad flare of mine is antibiotics and prednisone. Even with no sign of infection. It’s no so much a life lesson, as it is a road map to effective treatment. I’m very fortunate that I didn’t have to endure hospital stays and scary episodes of not being able to breathe when I was younger. In fact, we didn’t even know what I had was asthma until I was in high school. We always just thought I had recurrent bronchitis. Then, it was called “atypical coughing asthma” THEN, I found out that “coughing asthma” really isn’t that “atypical” after all.

Between my two daughters, one is moderate to severely asthmatic, with poor control. Her doctor calls her a “brittle asthmatic” because even on controller meds, she is never truly under control. My oldest has reactive airways, only having trouble when she is sick. She also gets pneumonia about once a year. Asthma in my children has taught me quite a bit more that my own asthma.

* I have learned that I am stronger than I think I am. I may feel like I’m going to break…but I always find it in me to take one more step.

*I’ve learned that it’s OK to ask for help. It’s ok to accept help. Even just someone offering a shoulder to cry on, or to be a sounding board can be a lifeline.

*I’ve learned to trust my instincts. If something FEELS wrong, it probably is. If I hadn’t listened to my instincts when A. was a baby, she most likely wouldn’t have survived having RSV.

*I’ve learned that it’s OK to question doctors if you don’t agree with a course of action.

*I’ve learned that it’s OK to FIRE doctors if you don’t agree with a course of action. To me…”more medication” is NOT an answer.

*I’ve learned that children are pretty resilient.

*I’ve learned that I am not in control of this ride. I may not LIKE that I’m not in control, but I’m aware of it.

*I’ve learned that sometimes, it’s OK to change expectations, and that it’s OK to have different expectations for my different children.

I don’t know that I’d have learned these lessons if I didn’t have a chronically ill child. I’m sure I would have lived out my life perfectly OK without learning these lessons…but as I often say…”it is what it is”

Even when I CAN, I don’t!

Sleep through the night, that is.

My parents took the girls for the weekend. A will be skiing today…I’m pretty sure M will be hanging out with Grammy…she was still looking pretty pathetic last night.

We asked M several times…Grammy, Grampy and I, whether she wanted to go, or stay home. She was adamant that she wanted to go to visit, but “maybe probably not go skiing” So, I packed them all up, got all their meds into their containers. Wrote them all out. (A mentioned that “wow, there sure are a lot of medicines written here, most of them are Sissa’s) I put them in their seats in Grampy’s car, and kissed them good bye.

About 3 hours later, my phone rang…I had forgotten to write down the antibiotic. Thankfully, dad thought to call, rather than decide just to give it to her. I guess when you are writing down 8 medications at 3 different times a day, it’s just human to forget the newest and most temporary one.

I climbed into bed last night, almost giddy at the thought of sleeping through the night. I fell asleep, and wouldn’t you know…my brain wanted me to wake up…and wake up I did. I actually got up to check on M. even though I KNEW she wasn’t sleeping in her own bed last night. Hopefully, tonight, my brain will remember that I don’t need to wake up.

It was a long night!

I was sure that M. was flaring. I had instituted the “sick plan” (and endured the questions and looks from the pharmacist that happens every time a med is prescribed differently than the norm….”yes, I know Pulmicort is a q 12 drug. Yes, I know he prescribed it 3x/day…I’m aware of the potential for side effects.”) After following the sick plan for 5 days…I figured that we were out of the woods. Except that her nose was still running, and she was beginning to cough A LOT more. So, I decided to keep up with the q 4 nebs, setting my alarm at night so we wouldn’t miss one. It seemed to be helping…so I kept up with that for a few days. Till last night…when FIRST, I hit off on the alarm, rather than getting up…until the cough was so bad that it roused me. By then, of course…it took longer for the albuterol to open her lungs…which then caused her to cough so much she threw up. Of course, for M. throwing up is totally within the norm…and she’s really good at it…when she knows it’s coming. She wasn’t expecting to throw up, so instead of getting to the bathroom (since, bad mom…I put away the bowl) she vomited all over the bed. This caused hysterics…which woke A. Fun times, now I was doing laundry at 1:30am…and the adrenaline of waking up to hysterical screaming was coursing through my body…sleep was now not going to happen.

Somehow, we made it through the night…and I put a call into the Pulmo. He was not in the office…and his nurse said…how about you call the pediatrician, in case she has an infection. So, I called, they squeezed us in. Verdict…totally clear lungs, O2 sats at 100%…most likely…sinus infection. This means the sick plan worked, and kept the cold from causing a flare…but, she needs antibiotics. Hopefully, she’ll be perkier after a good nights sleep and a couple doses of the Zyrithromycin.

She’s a little more comfortable with some cold medicine in her. I’m hoping I can convince her to nap in a bit…I know I want to.

The alphabet soup of my life

When I was in school for Occupational Therapy, we all joked that we talked in letters. Everything had an abbreviation, and we rarely used the actual words when we talked to each other.

As I was laying in bed last night, it hit me that I talk in letters again, even though I’m nowhere near the world of OT. Things like “q4 nebs” and PRN and TID fall from my lips as easily as singing my ABC’s. I often forget that not everyone understand what the heck I’m talking about. I was talking to a friend, and said “We’re doing q4 nebs, round the clock, so I’m up twice a night…I’m exhausted.” She looked at me as though I was speaking Swahili, and really, to her…I was.

I was filling in my “purse card” (the listing of all the medications the girls take, along with dosages) because we’ve had another med change…so I needed the card to reflect that. How sad is it, that between the two girls, I literally can’t remember the names or dosages of all the medication they take. A “only” takes 4 medications daily…M, at times, is taking 7 different medications. She’s been asking lately why she has to take so much medication, and how come it doesn’t really make her feel better. I hate that I don’t have the answers.

Why I’m blogging again

I’ve decided I need to blog again. Right now, I’m feeling completely alone. In my circle of friends, M “just” has asthma. To them, it’s no big deal. “So she needs to take puffers every day, and sometimes she needs the nebulizer” is the attitude. We have a friend who’s son has bigger problems. (and I KNOW he has a more severe disease…but it doesn’t diminish what we’re going through in our house.) However, because of this attitude, I feel like I have nowhere to go when I’m feeling overwhelmed, and sad, and scared. Perhaps, writing it all out will help. Maybe it won’t…but it’s worth a shot, right?