Sunday, April 28, 2013

I regret being well-rested, said no mother, ever

And yet, here I am. Surfing, listening to the shushing of the cycling baby monitor, up waaay past my bedtime. There are 6 loads of laundry waiting to be folded (the sitter folded a grand total of ONE), and all sorts of administrative things I could be doing (last year's taxes, oh... and the year before's), besides the most pressing of all (sleep).

Although Bo has stopped growing (no one knows why, but we are going to find out, dammit!), as in not a centimeter in many months, and the constant IV drug shortages are nerve-wracking, the truth is, the kid is full of vinegar (as in, up at 6:30am, jumping on my bed and demanding we "watch my jig!"). And the other truth is, while all that may be contributing to my poor sleep hygiene, I would most likely be ding-ding/dong-dong late into the night, anyway. Also, the drug of biggest concern has returned to the market just in time (BIG sigh). Although, who knows which one will be in shortage next?

We had our first glorious first real day of spring. After a breakfast of donuts and coffee (NOT for them! they had milk), we spent the entire morning outside, goofing around on the lawn, cleaning up the lawn and doing a little tidying up. We ducked inside for a quick lunch, and maintenance of the marathon laundry (see above) event for me, while the kids had an hour of quiet time. We went BACK out to the playground, got a hurried dinner and shuffled my fresh-smelling littles into their fluffy beds.

My best friend from my last office stopped by, my guy is driving home from a great gig, and I even got to drop off the plastic bag recycling at the store (in my attempt to be doing enough). And the nerdiest thing that has filled me with glee is discovering that the service spits out a report of ALL the prescription meds for each of us in whatever timeframe I request from ALL the pharmacies we use, so I never have to chase BPA-filled receipts to file my FSA claim forms, ever again. The close runner-up of nerd-alert? I just realized that the bottomless pit of cardboard boxes from Bo's medical supplies can be used to contain all our yardwaste for the city's monthly brush pick-up! Laziness score + recycling avoidance (the time and effort required to breakdown boxes for recycling is almost insulting) + freecycle avoidance + lawnwaste/kraftbag frugality savings $$!!

So, a red-letter day, full of sun, fresh air, and newly discovered efficiencies. Corny jokes, and made-up song lyrics to nursery rhymes. Goldfish crackers and secret gnomes (there's a small village in a huge knot in the tree around the corner from the house, which Ahn demands to "sthee gnomz?!" like 8 times a day). Lush green grass, crisp evenings, hot tea. The next 8 months always make up for the last 2 (because January and February are beloved because of their winteryness; whereas March and April are ALWAYS that way, and scorned for it). Maybe will put up a tree swing!

Maybe I'll read my bookclub book. Night, all!

Tuesday, April 16, 2013

Waiting to see what my Senators are REALLY made of

Just sent both senators modifications of the below. If you want to help (or stop my incessant whining), you can write your senators, too. Tell them that my whining keeps you up at night. That me and my kid are (or are like) family. That we matter. And that a sucky painful and slow death will just make everything suckier.

I know people are freaking out about the bombings. But see, that wasn't preventable. IV drug shortages? Those are kinda preventable. And what a lot of folks don't realize is that LOTS of people will be impacted when the well truly runs dry (even, for instance, all those injured in the Boston attack; tiny babies in the NICU, their families; anyone who gets in a car-crash and needs IV supplementation; cancer patients who need the same; you see where this is going).

So you have something to crib from, this is what I wrote. When I'm feeling ultra-creative, I will try and post a letter you can just copy and paste and not have to edit one bit. Until then, let this be your muse:

Dear Senator:

I left a voicemail on your office phone a few weeks ago regarding my dismay over the IV drug shortages. Your office hands were kind enough to remit a letter acknowledging receipt of said message, and declared you would need further details.

Here they are: 
I live in xxxxxxxxxxx with my family of 4. I am the primary wage-earner, and a native Michigander. I have 2 advanced degrees and choose to live in Michigan. 

My son has an ultra-rare (there are fewer than a dozen living in the world) disease (microvillous inclusion disease) whereby he absorbs nothing through his gastrointestinal tract. He is alive by receiving all his fluid and nutrition requirements intravenously. His infusion company has been heroic in their efforts to meet his nutritional needs through many of the shortages, until now. 

The current IV phosphate shortages have almost stymied us. There are only 2 products with this as their salt: potassium phosphate (also known as "K-phos") and sodium phosphate. There are only 2 FDA-approved manufacturers of this product (as many other companies made the business decision in the '90's up till now, to exit this business for not generating any profit): American Regent (Luitpold), and Hospira.

Apparently Hospira's enormous 483 compelled them to fire their CEO and hire one who promised to fix it. They poured $125MM into it (probably a bunch of charlatan "consultants"), and got reinspected by FDA. They received a scathing additional 483, the new hotshot CEO was replaced, and we are still in critical shortage situation.

When I say critical, what I mean is, my son already has bones that are not as dense as they should be. He is FIVE years old. He should not be getting osteoperosis. But without phosphorous, the calcium has nothing to hang onto, and then the bones fall apart. His bones will start dissolving, little by little. He will start to get fractures. Many, small hairline fractures. His growth will stop. He will be in chronic and unquenchable pain. He will be in a wheelchair. At some point, if this goes on for long enough, this bone disease will progress beyond fixing, even if this product comes back online to full volume of supply.

I need your help. I don't know what you can do. Maybe help us source from Europe? Maybe help these companies get compliant? Maybe send a few bucks to FDA to get these places reinspected sooner? I really am at a loss, which is saying a lot, considering I trained as a mircrobiologist academically and spent my first 3 years in industry working to get a big pharmaceutical company out of its sterile injectables' 483.

To see how far we have come with my child's health only to face this long, dark tunnel of uncertainty lined with threats of suffering and pain seems excruciatingly cruel. UMich doctors told us he would not live to see his 1st birthday without a multimillion dollar multi-visceral organ transplant. And that without that, he definitely would not live to see 5. He has never been transplanted. He has not died, yet. His 6th birthday is this coming June. He goes to the public school around the corner. He reads at a 6th grade level. He loves to do robot dances. And antagonize his 2 year old sister. He loves to find science books at the library. And play board games with his nurses.

Please help my son. 

Respectfully yours,

PS I have voted at every election, no matter where I was living, and always voted for you at every opportunity. I'm only slightly pandering (you can see why), but honestly, it's because I believe that you are truly putting Michigan's best interests first.

Friday, April 12, 2013

It's a Nailbiter

For most of my youth and young adult life I felt like a girl waiting for a cause. With the energy and drive of ten men, I could have been the next Buddha, given the right initiative. Sadly, I was a bit, um, emotionally underdeveloped, and fortunately for me, I was privileged enough to have very little troubling my mind (thank you  to the Women's Rights and Civil Rights activists who made my laconic teenage years possible).

Right now, the IV drug shortages are threatening Bo's health. If we cannot get enough IV phoshphates and if the oral pills (which technically shouldn't work, but appear to be helping, but whose helping is nearly impossible to quantify because he doesn't absorb like a typical kid...) they want to admit him to the hospital. Theoretically, they would maintain a supply when infusion companies have run out. Except that the shortages are so severe, our hospital has also run out.

This is a big deal because his bones are already not as dense as they should be. Missing phosphorous would turn his underdense bones into brittle twigs. It would suck and be very painful.

So write your senator. Because no matter what the infusion companies, pharmacies or even doctors do, it's the voting citizen that the senators' lackeys are counting when they are deciding on legislation that needs more teeth/enforcement.

Other than that, just another day in paradise (40 degrees, grey and rainy with a high of 39 tomorrow).