Just be thankful...

DISCLAIMER: In no way, shape or form do I intend to minimize the very harsh reality of children with terminal illnesses.

My baby boy has chronic respiratory and sinus illness. Since he was 5 weeks old, he's had a nebulizer machine at home to administer his asthma medications. Since he was 3 months old, he's taken the highest-possible-for-his-age/weight-dose of Prevacid to treat the symptoms of reflux. He's had 4-6 courses of oral steroids each year. He is almost 29 months old.

His current list of medications includes:
Pulmicort Respules 0.5mg nebulized, twice per day ($35)
Albuterol 2.5mg nebulized, every 4-6 hours as needed for coughing and wheezing ($10)
Prevacid 15mg tablet, twice per day ($60)
Zyrtec 2.5mg, once per day at bedtime ($10)
Flonase Nasal Spray, once per nostril per day at bedtime ($10)
Prednisone 15mg, twice per day ($10)
Omnicef 250mg, once per day ($35/10 days)
Multivitamin + Omegas ($20)

At 29 months old.

I blogged a week or so ago about his specialists appointments at Duke. He also sees an ENT at Chapel Hill. He had his first set of ear tubes at just shy of 7 months old. His second set at 18 months, and his adenoids removed also at that time.

Two weeks ago today, Levi was admitted to the hospital for an asthma flare. While there, and while opportunity presented itself, our Pediatrician ordered a sinus CT to see if there was indication that blockages could be to blame for the always running nose. All of his sinus cavities were blocked. She asked us to follow-up with the ENT he sees at UNC about this. Yesterday was that day.

Now, let me just preface by saying, I feel so very blessed that Levi is not sick with a terminal illness. And my complaints about my child's illnesses are in no way meant to detract from the realities of those with children with terminal illness. I know that, even at his worst, we still have it pretty good.

But, combine the sleepless nights, side effects of all the different medications, loss from missing work due to doctor's appointments and illnesses, loss of money spent for child care he can't attend due to doctor's appointments and illnesses, and loss of money spent on medications that treat ONLY his SYMPTOMS and not the root cause of the chronic illnesses, and you have a pretty exhausted mom. With very little patience for doctors making 6 figures who walk into an exam room, listen to my chief complaint about my child, look me in the eye and say, "Be thankful it's not terminal."

You think I'm NOT thankful? I'm absolutely thankful. But I'm sick of helping pay your six-figure salary with the measley pay I get after I pay bundles for health insurance and child care, so you can blow me off by saying, "he just gets more colds that are more severe that the average child." NO, REALLY?!? That's why we're here. So you can tell us WHY. AND FIX IT. That's your JOB. That's why you make so much more money than I do.

Let me end by saying that if you're reading this blog post and you ARE the parent of a terminal child, my heart goes out to you. I cry for children like yours. And I pray earnestly for them and their families.

But, my heart also goes out to other parents of chronic children, while your children's illnesses may not be terminal, I know, first-hand, how frustrating they can be.

I'll go shut up now, and just be thankful.