Wednesday, January 30, 2008

Dear Mr. Endocrinologist

I understand that we were supposed to visit you 6 months ago; however, it proved extremely difficult to juggle our various priorities and medical concerns. 2007 was hell. We went through breast cancer, mastectomy, reconstructive surgery, a week-long in hospital video EEG, immune disorders, a diagnosis for our child that threw us for a loop, reconstructive surgery, and did I mention more reconstructive surgery? And 2008 isn’t looking so great, either. Today I am using my non-existent sick leave to visit you, prior to the non-existent sick leave I will have to take for my daughter’s week-long surgery, for which I will receive no salary, much as we need the salary to cover deductibles, co-pays for doctors and specialists such as yourself, and the $1000 a year in meds that we require.

So, amaze me. Pull out all the stops. Demonstrate all you know about the connection between the endocrine system and tuberous sclerosis. Order some more tests. Examine my daughter from head do toe. Because I better be here for more than you glancing at my daughter for a few minutes and handing me a prescription.

Very ticked off mother

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.

Friday, January 25, 2008


There have been a lot of visits to Firecracker's Caringbridge page recently. Dear Husband alerted me to the sudden boost in traffic, and I know that many of you RevGals have been there to visit. Thank you so much for your prayers. I've been amazed at the love shown to us.

My posting has been sluggish. I suppose I've lost some of the fun of it. My energy has flagged. I've exhausted much of my good humor.

Certainly not everything has been dreary--not by a long shot. Christmas was wonderful. DramaQueen had a lovely birthday party, and a friend and I are planning a pirate party for Firecracker--there will even be a treasure hunt. It snowed one day and we all went outside and had a snowball fight. That was one of the best days, one of the most purely happy days I've known of late. My friend is also organizing a logistical chart to coordinate help during Firecracker's hospital stay, as well as rounding up my coworkers to make posters and create fun diversions for her.

I'm home sick today. That gives me the chance to rest in more ways than one. Last night I woke up terribly frightened. I wasn't awake enough to sort out what I was afraid of, but my muscles were tensed and my heart racing. I need a rest from such moments. I need a rest from trying hard to focus and concentrate. No wonder I caught the flu or whatever it is. My brain has worn itself out. So I'm grateful even to be sick right now, because I can rest and just look out at the sunshine from the sanctuarly of my bed.

Thanks again, everyone.