Monday, January 28, 2008

Cough, Cough, Cough

Cold fingers have been playing along my spine today. Firecracker has caught whatever virus I had and is coughing. Her school nurse even called today, asking to use the nebulizer sooner than indicated. Pneumonia, I worry. Pneumonia, pneumonia, pneumonia. We have spent a lot of time with Firecracker in the hospital with pneumonia. So today I have a dark feeling of dread. Isn’t it odd that I find this more sinister than the upcoming brain surgery? I guess it is because I remember how long she was on oxygen after her birth, and how the nurses gave me steroid shots in the hopes of maturing her lungs before I finally gave birth. They only got to inject 2 of 3. Would that third shot have done the trick? Because she was so premature, she has chronic lung disease. That sounds so ugly: chronic lung disease. I prefer the way the pulmonologist termed it: bronchopulmonary dysplasia. There’s nothing to be done about this chronic lung disease. They can’t remove it the way they can remove a tuber from her brain. She’s stuck with it, on top of worrying about whether the tuberous sclerosis will affect her lungs as she gets older and cause LAM--lymphangioleiomyomatosis--which can only be cured with a lung transplant.

I've spent almost 6 years now worrying about Firecracker. Those 2 months in the NICU after her birth were just the start of an endless journey.


  1. I'm so sorry you guys are feeling so cruddy! Just to let you know, my goats are no longer with me, but I didn't forget my promise to Firecracker. Peggy over at Hidden Haven Homestead has my herd now. I told her I'd promised Firecracker she could name one of this season's babies and Peggy agreed to keep that promise for me.

    Two little bucklings were born last night and I think one of them might be needing a name. You should go by and introduce yourself!

  2. Hey Lady!

    I'll keep your firecracker in my prayers, especially on the day before, and on her birthday...

    I hope her pulmonary issues improve with age -- from reading the little I've read, I don't know if that's a possibility -- I do know about chronic (well, the thing you think sounds ugly...) I know my Mom thought it sounded ugly too... I was sick all of my life and I was diagnosed with cystic fibrosis on the day of my 13th birthday in 1973 -- back then life expectency was 14... In a similar way to you, I can't imagine what Mom was feeling back then -- but like you seem to be, she was a good Mom and I'm still here...

    If Firecracker ever develops LAM and needs new lungs -- I hope she gets what she needs... And I hope her journey is as freakin' awesome as mine has been since I've gotten mine...

    Since my transplant, I do my bestest to promote awareness -- to tell people about the beautiful girl who saved my life, Kari -- to let them know that organ donation was something she wanted, though I'm sure that was instilled by an incredible family and the friends who touched her life... But I tell people about her so that they know that organ donors are heroes to those of us they give life, and to our families -- I tell them in hopes that they will want to be someone's hero when that time comes -- that they will want to be a hero to Firecracker and her Mom should that time ever come...

    You take care, Bad Alice -- take good care of Firecracker (and Drama Queen)... If you ever want to drop by -- I have an evolving little website tribute to my donor, Kari, at:

    And I blog at:



    Steve Ferkau
    Chicago, IL

  3. Hi Alice, I am the new mom for rosie's goat herd. DiDi had a pretty rough delivery last night but is doing well with her 2 little boy goats. I would love if Firecracker could give one of them a name. Keeping your family in my prayers.

  4. I stumbled across your blog and just wanted to leave a comment. I have LAM and I want you to know everyone is different. Some women live for years with LAM and never need a transplant. Check out this great website:

  5. Rosie and Peggy: I know Abby would love to name a goat. I will show her the photos. You never know what you'll get though. She named her stuffed bunny "Cowtail" and her stuffed chihuahua "Chika Chika Wawa," and sometimes "Chincilla."

    Steve and Anonymous: Thank you for this information and inspiration.