Tuesday, March 20, 2012

Big Day, Brave Frog, Tired Mama

I knew today would be a big day.

Froggy has been coughing every night, most of the night for two-three weeks now. On Saturday she vomited in bed, the mucus was so thick. I've never heard her search for breath, to have a moment where air was not just there, but something to work for. It breaks my heart. This cold season has not been kind and Kindergarten has felt more like a cess pool than an education. This month she's had a sinus infection, ear infection, and now respiratory junk she hasn't been able to shake.

That being said, we are not hanging out in bed. She is still doing gymnastics, going to school, birthday parties, going on hikes, riding her bike, no fever, no change in anything. Other than long, sleepless nights of major mucus, we are still living our lives normally. Our treatments have increased from two a day to three or four, plus sinus rinses and sprays and antibiotics, but there is still fun, learning, and lots of adventure!

I've been on high alert and haven't had REM sleep in a month. I'm so tired, that I need a new word for tired. There needs to be a word for overwhelmed, tired and depleted but still going, still waking up everyday with energy. I have no idea where it comes from. I'm so tired and then out of nowhere I get a second wind and then a third wind, and then Froggy is in bed and the dishes are done and nebs are boiled and my calls are made and the dog has been walked. And if I stopped to think about it, I'd cry. But if I don't stop and don't think, it happens and everyone is alive and okay, bills are paid and the garbage is out and groceries are bought, dinner made, stories read, homework done, and surprisingly, we have fun doing it. I don't get it.

I've had moments of sleep deprived hallucinations where I'm not sure what is sleep and awake, dream and reality. I've been on a kind of auto pilot that seems to work. We're alive, things are getting done. I'm also realistic enough to know this cannot go on forever. At some point the pilot has to come off her lunch break and relieve the autopilot. I'm like the blow up doll on the movie AIRPLANE, a creepy blowup Froggymama who administers meds and makes dinner and at the end of the night when one would think I'd be exhausted and tired, I am awake listening to Froggy, hoisting her up so she can cough, blowing her nose, making sure she's breathing, giving enzymes during her g-tube feed, unhooking her when she's done. And as tired as I am, I can't believe I'm not more tired. This energy is like newparent energy when you're up all night with a newborn and still able to function. Somehow, someway it just appears. I guess because it has to. When you don't have a live-in partner, you are you're own partner, so someone's gotta do it.

So...when she woke up at 7am for her CF Clinic, I was ready for a big day. I woke up an hour earlier and prepared her meds, nebs, clothes, sinus rinse, lunch and had made coffee, fed the cats, scooped the poop, I was ready to go. I woke her up and as she stood in front of the hall heater (because it's 40 degrees in CA these days) she said her arm hurt. I saw a red bump on her neck, and upon lifting her arm found hundreds of bumps. Legs, arms, back. "What now, chicken pox, are you kidding me?" I fastforwarded to next week when we are supposed to fly to Iowa and knew if it was something serious our Spring Break would be in the hospital rather than with family.

I called the hospital, no one answered. Now, I'm in 'get her to the hospital mode' and I start packing everything in case it's an allergic reaction. I throw the Pulmozyme back in the fridge, pack the meds, because if she's allergic to the antibiotic, I'm not going to add injury to insult, red dots to red dots. I grab the kindle to keep her busy at the appt, plus all the necessities for the Long Beach Aquarium afterwards in case it's nothing. We hit the road at 8:30, no breakfast, no treatment, and mama is looking tired and haggard. What else is new?

The car pool lane on the 405 to Long Beach in rush hour is like a golden ticket to Willy Wonka's chocolate factory. We were there before you could say, "Ooompda Loompda Doompta dee do." I passed everyone like, "Don't you wish you had a kiddo with CF, suckas!"

Have I mentioned how much I love our new hospital? We show up an hour and a half early for our appt., and they say, "No problem!" No problem. I'm sorry, did you hear me? It phased no one. They took us directly to a room. Our pulmonologist just happens to be an allergist. He took one look at her and felt confidant it was an allergic reaction to her sulpha antibiotic. We were in and out in 2 hours (social worker, GI doc, Nutritionist, nurse, Pulmonologist, Physical Therapist, and Respiratory Therapist). TWO HOURS!!! And we got free meds and nebulizer cups. Score!

Her PFT's were low in the 80's. She's usually 112 or 116. So her Respiratory Therapist came back at the end of our appt. to see if we could score better PFT's. (Pulmonary Function Test).

After some super hard work from the Frog, she scored 95! For the coughing and post nasal drip, 95 was quite an accomplishment. I'm amazed by how Froggy listens to the RT (because she sure as hell doesn't listen to me) to follow direction and work her little lungs off for high scores. She was so determined. It made this mama proud.

The docs prescribed an inhaled steroid (it's temporary), and some more nasal sprays and another antibiotic. I know we'll knock out this respiratory junk. And I know this weekend when Froggy goes to her dad's, I will sleep 16 hours (hopefully) and catch up with all the work I can't do while taking care of her. Those (every other weekends) are the only way I could get all the errands run and have a moment to take a breath of my own and say, "I can do this for two more weeks."

The other day I met a mom who bowed down and said, "I don't know how single moms do it." And whenever I'm feeling sorry for myself or the laundry has piled up and the bills aren't paid and I just sit there and think, "How?" I think about my friend B. who has an adult son with Autism and how they are up everynight with him and have been for 20 years, how they've coped and lived through chronic stress that I can only imagine. And when asked how she does it, in her adorable 4 foot 11 New York sweet tough girl accent says, "What f*cking choice do I have?" And if you knew B. you'd know it's not about self pity, just reality. Sometimes there is no choice.

I think if my autopilot Froggymama self could talk out of her plastic lips she would say the same thing, "What f*cking choice do I have?"

So...after our appt. we went to the aquarium, then home to do her treatments and snack, then to gymnastics (where I ran to the drugstore for her antibiotics she's not allergic to, then to the grocery store), picked her up, home for bath, meds, dinner, bedtime, snuggles, stories, and here I am, 11:49pm and after I run downstairs to get the last load out of the machine, I am happy to be Froggy's mama. To have the priviledge of being given this responsibility and the joy that comes with it. Froggy is worth it. And I know no matter what things will work out because even when there is nothing left there is always something left. Because there has to be.

Froggy's Clinic Results:

Weight: 46.2 lbs.
Height: 46cm's.
BMI: 50 percentile.
PFT's: 95.

Thursday, March 15, 2012

My little bear cub.

by James Wright
A bear under the snow
Turns over to yawn.
It's been a long, hard rest.
Once, as she lay asleep, her cubs fell
Out of her hair,
And she did not know them.
It's hard to breathe
In a tight grave:So she roars,
And the roof breaks.
Dark rivers and leaves
Pour down.
When the wind opens its doors
In its own good time,
The cubs follow that relaxed and beautiful woman
Outside to the unfamiliar cities
Of moss.
by James Wright, from Above the River: The Collected Poems. © Wesleyan University Press, 1992.

Thursday, March 01, 2012

First comes love then comes...nahh.

Froggy's 'boyfriend' at school gave her a picture of the two of them getting married. They were in front of a synagogue (yes, she found a nice Jewish boy), and Froggy had a veil and he had a top hat. This was our conversation:

FM: Wow, did Miles draw a picture of you two?
Froggy: Yep.

FM: What's it about?
Froggy: I don't know.

FM: Well it looks like it's you two getting married.
Froggy: (long pause and then in total deadpan) Yeah, I don't know about that.