This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

There is a scene from “The Devil Wears Prada” in which Meryl Streep’s version of Anna Wintour cooly addresses her staff: “Tales of your incompetence do not interest me.”

I like the scene so much I forced Chinese college students act it out in English class when Mark and I were on a detour teaching in the Middle Kingdom few years back. The exercise promoted confidence and speaking skills…or maybe it just entertained me.

I never thought I’d say something like that in real life. My version was less cool, more insane, and, also, in reference to poo.

My son’s poo. For now, it comes out of a small intestine opening on his stomach that looks like a fat red lifesaver. The poo drains into a bag. We suction the poo out of that bag and pump it into the opening of his large intestine. Then it comes out of his bum like magic.

Wapow!

We are almost out of those poo-catching bags. As I write this I have one left. Supplies have been dwindling for a week.

Chasing down the bags has thus become the sole purpose of my existence.

Poo bags, aka ostemy supplies, demonstrated by my daughter's stuffed turtle.

Poo bags, aka ostemy supplies, demonstrated by my daughter’s stuffed turtle.

Last week, I visited an independent pharmacist in my desperate search for wee baby poo bags. Not only was he out of stock, a box cost $85. Independent pharmacies like his don’t work with my insurance company, the man behind the counter told me. This is because the insurance company wants to pay the independent pharmacy less than the cost of the bags, he claimed. Well, that’s crap. I was poo out of luck.

I called the at-home nursing company to which I’d just paid almost 1K. I needed help to locate an emergency supply. The company had already gathered supplies like this once, scrounging up some extras from the hospital. They supply me with everything else – the poo pump, dressing changes for his central line, etc. When I asked why they don’t hand over poo bag (ostemy supplies) automatically, I was told “We are an infusion company and don’t keep those items in stock.”

Hadn’t the hospital told me? — I was supposed to order these myself.

Um, no.

Why am I working with an infusion company when my son also needs ostemy supplies? I haven’t figured that out yet. This wasn’t explained to me when I signed up with this company at the hospital. I wasn’t given any choice. It was more like: “Here’s your nursing company. Now sign this line and hand over a grand.”

Anyhow, once I figured out I had to order the bags I did so right away.

I spent an hour on the phone with a medical supply company yesterday trying to get the bags shipped. The order was marked “urgent” — allegedly — yet I had to call every day for four business days in a row to get them to ship. Yesterday, the company realized the product I wanted was on back order. WOW THANKS.

You, too, can ride a scooter donning ostemy supplies, according to strange marketing materials.

You, too, can ride a scooter donning ostemy supplies, according to strange marketing materials.

Why was I never told I had to order them? Why hadn’t the hospital set me up with a supply?

That’s a good question for my case manager, the nursing company official informed me.

Case manager?

I have one of those? I only found out after I started to have nightmares about little man crapping over his adorable little jammy suits, or perhaps into a Scotch-taped Ziploc bag. Golly, I have a case manager whose purpose might be to prevent such scenarios.

In a perfect world, a case manager would have let me know who she is. She would have been proactive about my medical supplies. She would not only have coordinated Eli’s care but also communicated those details to us as we left the NICU.

The case manager allegedly put some poo bags up at the NICU front counter for me yesterday. I showed up. They weren’t there. Another hour down the poo shoot.

I called my sister, a nurse, who was outraged. It was fun to revel in our anger for a minute, but it didn’t get me more poo bags.

Eli had one bag left. He tends to go through two to four in a day.

“This is bullshit!” she exclaimed. expletive expletive, etc. etc. Yeah!

Pam did tell me I’d learn how to be a bitch. I just didn’t figure it out fast enough in this case.

I’m going to request another case manager from a supervisor.

I would have done this yesterday but I was too busy chasing down poo bags with a glint of insanity in my eye.

“I’m not paying you people thousands of dollars for incompetence,” I said to the at-home nurse. “Get me the bags tonight. There is no other option… No, I said there is no other option.”

“Coordinate my son’s care? Ha! She can’t coordinate a plastic bag!”

Real things that escaped my lips during my brief descent into madness, as I clutched my last remaining poo bag.

Laila jumps for joy, with poo bags, an unsuspecting participant in mommy's madness.

Laila jumps for joy, with poo bags, an unsuspecting participant in mommy’s madness.

The order finally shipped. I finally got my emergency supply.

Eli is not leaking poo on his tummy and adorable jammy suits. What respectable baby would want that?

UPDATE:

I spoke to the case manager’s supervisor today, who was very reasonable. She explained to me what a case manager’s job was. Then it was easy to point out that the majority of what she described did not occur. Or, if it did, I had no idea. She apologized and agreed that this was all sub par. The problems may not have been solved in time to stop my field trip down crazy lane, but perhaps I’ve helped the next family transitioning home.

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8 thoughts on “Tales of poo bag incompetence do not interest me…

  1. OMG…I’m so sorry you’ve had to go through all this. I now consider ourselves very lucky b/c we did not ever have to go through this with UMHS. I’m sure some people have their problems but for BMT patients they seem to have it figured out. All I can say is…You go girl!!!

    Like

  2. Classic line: She can’t coordinate a plastic bag! I am so glad you thought of this in the moment and had the bitchy wherewithal to say it!!

    Like

    1. j&m says:

      YEah, it felt good to say, but I was just venting to the at-home nurse in a rant about incompetence. I’m glad I cooled off for, oh, 12 hours before having a reasonable conversation about what went wrong!

      Like

  3. Angie says:

    Where’s the like button? You get ’em!

    Like

  4. Crazed behavior is sometimes the only way to survive…..it looks like you’re doing an excellent job, Jules!!!!!! You are also a WONDERFULLY entertaining writer…..this should be on the baby best-seller list!!!!
    Love to each and every one of you crazy and lovely folk!

    Like

  5. Ruth says:

    You do what you have to do. It’s amazing! It’s also terrible they put you through this. Glad Eli has you.

    Like

    1. j&m says:

      Thx. It was NBD. Just a temporary frustration regarding your run of the mill poo bags!

      Like

  6. Kelly Pyszel says:

    Wowy wow…What a nail-biter. Eli’s got a great mom in his corner. Love you!

    Like

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