Charlie has been approved by our insurance company for, get this, a single day of inpatient feeding therapy. One single day. After that, our appointed caseworker and the insurance company’s appointed caseworker will duke it out for approval of continued care in seven day increments.
Who comes up with this shit?
The minimum amount of time recommended for successful feeding therapy is four weeks. So if the insurance goons decide to pull the plug early, and his therapists see value in him continuing on, we have decided we will do what it takes to keep him there. Sell my car (we own it outright, finally), fund raise, sell blood, prostitute the cats, whatever it takes. The cats have not been informed of our plans. I figure it’s something we’ll introduce to them slowly. With cat treats. They’re pretty blind to reality when there are cat treats involved.
Things have started to feel particularly desperate this week with regard to Charlie’s feeding tube. He’s gotten very dextrous and it’s nothing for him to yank it out of his face – a trick he has started performing WHILE BEING FED. It’s also impeding his development. We can’t let him roll over at night, for fear of him getting it wrapped around his neck. We can’t tape it to his back to avoid him wrapping it around his neck because he rolls over on it and pops it open, leaving him soaking in his own stomach contents. THAT was a fun night. I didn’t cry, but I’m pretty sure that was because of the meds.
Plus, we’ve run out of the tubes provided by the hospital during his stay in June. And our insurance, NATURALLY, doesn’t cover home health, which would provide us with more. We have to buy them ourselves. At $20 a pop, and Charlie yanking them out six, seven times a week, well, he’s got some expensive habits, this one. Truly, it’s not even the money. It’s the stress of it all, hovering over us. Am I going to get to sleep for more than a couple hours before he pulls his tube out again and I have to intubate a screaming baby at 3AM?
On top of all of that, Charlie is fed by gravity, through a large syringe. If he decides he doesn’t want to be fed and starts crying, it forces the formula right back up the tube and out the syringe. He more often than not does NOT want to be fed. This place is like a circus. Thankfully, he’s become a fan of PBS’ Dinosaur Train and that buys me about ten minutes of tenuous bliss. And he’s wild about the show’s paleontologist, which is so funny to me. That’s Charlie, in fact, watching Dr. Scott. Grinning like a fool.
I just want a baby who eats. From his mouth. And enjoys it. He’s changed so much since getting that tube – always a little fussy, always on the verge of emptying his stomach onto my lap, one way or another. I want him to crawl and roll and sit and laugh and swallow. I don’t cry, but I want to. I feel it down there in my stomach, rolling and gurgling. I know it’s the antidepressants keeping it there, but sometimes, I think I might feel better if I just got it all out.
Thank you for all your prayers and well wishes. They mean so much. And thank you for the donations – I know I promised thank you notes last week. They’re coming, I swear! I couldn’t be more grateful to you all.
Oh, screw the notes.
I’m soooo soon glad the therapy starts soon. May the Flying Spaghetti Monster bless all of you.
I’ll only send a donation if you promise me (*pinky promise!* *imnotkidding*) that you (1) won’t send me a thank-you note, and (2) won’t fret one single second about it. You could always email me a two-line funny anecdote about little Charlie; that’s the maximum level of thanks I’d ever need from you. You’ve given us SO much of your life, so much more than could ever be expected of someone we’ve never met. That’s *more* than thanks enough. Truly.
Pinky swear
I sent a donation … add me to the list of people who don’t need a thank you note. (But don’t start a stressful list.)
I don’t think I’ve ever commented before, but I’m sending good thoughts, prayers, and internet hugs your way. Babies are so hard (mine is 14 months, and we too had some scary health issues to overcome), it’s why they are so adorable!
I’m so sorry you are going through this. I am sending healthful thoughts.
I have been around here lurking for years. I used to read you on my lunch hour, scrolling back in your archives, page after page. I’ve spoken up a time or two, but now it’s time for a little action (woo!). I just sent a small donation. For you. For the Dork Lord. For Charlie. For a little peace of mind. For cat treats. For whatever you need. Can’t wait to do a victory dance with you one day!!
Thinking good thoughts for you. I’m so sorry you have to deal with the insurance hassle on top of everything else. I’m sure your caseworker will fight hard for Charlie, though, so try to keep your chin up!
so many *HUGS* for your family!! i hope the medical and insurance folks find some better solutions soon and you can just exist together without worrying about money and mealtimes.
Admittedly I’m no expert (even after having dealt with insurance for years), but have your care advocate appeal appeal appeal if they decline ongoing coverage. Even if it doesn’t occur within the timeframe needed and you have to pay out of pocket (PLEASE solicit our donations! we are happy to give back in some small way – and like the above commenters said – do NOT worry about thank you notes), if you’re a pain for long enough, they may authorize retroactively and reimburse you. I can’t imagine how exhausting and infuriating all of this is, and how futile it must feel to fight, but the squeaky wheel DOES get the grease with these ***holes.
Of course, I and everyone else are sending tons of positive screw-you-insurance vibes that they will cover the full four weeks, but just in case.
Rooting for all of you! And it’s a good thing those kitties are spayed…you’d have a whole brothel’s worth of kittens soon
I will take thank yous in the form of Charlie updates too please
Hugs, I am really really wishing things get better soon.
I’m sure you are getting TONS of advice and I don’t want to overwhelm or add to the chorus, but I am a health care provider and take care of many medically complex kiddos, a lot of whom have feeding difficulties. Has anyone talked to you about a g-tube, to make your life easier? I know it sounds scary and involves surgery, but I have definitely known some kiddos who have more trouble with feeding therapy with an NG in because the tube is irritating; I also know many parents who, though initially very averse to a more permanent feeding tube, are SO grateful they did so because it made their baby happier and their lives much more manageable; it can also reduce reflux, since it isn’t irritating the esophagus like the NG does. Also, if you can get your hands on a feeding pump, that will avoid the issues with the gravity feed going anti-gravity
You can check with this organization, which collects various medical equipment that people are no longer using to see if they have any NGs of the appropriate size or pumps if your insurance also will not cover that: http://www.passitoncenter.org You might also try asking to speak to on of the nurses or social workers in the GI office–they can likely get you some extra tubes to tide you over until you are inpatient again. So sorry for all of the difficulty. Long time reader, first time commenter. I live in a different state so don’t know about your system/insurance, but I would be happy to talk more if it would be helpful.
The G tube is what we’ll go to if he fails therapy. I’m totally at peace with him getting one, surgery aside. I just want him to feel better.
Sorry, I am not an insurance expert, but I do send you good thoughts and best wishes. Maybe also a few literary quotes from Dr. Hugh Akston, but I’ll refrain from the specifics.
I keep hoping for some good news for you, and I cry more with every post. Like the others have said, please please do not worry about stupid thank you notes.
Insurance companies are idiots a lot of the time. I once was billed for a visit with a specialist because I had a “surgical procedure” performed during the visit, and those two things cannot be separately charged. I had no surgical procedure done… I had an ultrasound scan of my bladder, OUTSIDE of my body with no incision or the like. It was even coded correctly, as non-surgical. I wrote a letter of appeal, got a note from the specialist’s office, etc. And, still not covered. The point is, they suck a lot of the time, and their policies are often ridiculous.
Does giving him a toy during feeding help him not pull out the tubes? What about toys he is not supposed to have… say some of your cheaper necklaces or something? Car keys? Cell phones? As long as you are watching him, that stuff is fascinating to little ones and it won’t hurt him.
Sending you tons of internet hugs. I am so, so, so sorry that this is getting more frustrating. I hope they figure this out soon!
I also don’t care about a thank you card. Just do what you need to do to get that baby to eat a cheeseburger, or some runny goo, or whatever he wants.
With insurance, doggedness pays off. When I was undergoing treatment for breast cancer, my insurance company refused to cover required pre-op tests, even though they were absolutely standard-of-care. In all there was about $4,000 that I was out of pocket. I kept a file of my phone calls, who I spoke with and what they said, and kept plugging away. Eventually, I was reimbursed. Another thought: maybe a little publicity would be helpful. If a local paper did a story on your predicament …
I work for a health insurance company (one that would never put a member through this! Move to MA!!!!), and I couldn’t agree with this more- on both the doggedness AND the publicity, both approaches truly do work. Also, not knowing anything about your case manager, just more (unsolicited) advice- stay on top on whomever is managing this! They need to be the gatekeeper, go-between, and advocate for Charlie. This is the time to be your most vocal and outspoken self!
You’re all in my thoughts and prayers. Charlie is just so adorable! I call foul that he has to go through all this and that you and your husband have to endure the stress and worry.
I sent a donation – no note required – and really hope things improve for little Charlie. I’ve enjoyed reading your writing for years so please consider this plain and simple appreciation of your work!
Coincidentally I had my third (and last!) baby in May with a big gap between kids. Hearing your struggles makes me feel incredibly lucky to have had a healthy little one. I hope you are continuing to enjoy your time with little Charlie despite the many challenges you face. Good luck!
There’s an essay by Philip Lopate called Lake of Suffering in a book called Portrait Inside My Head that you might find comforting—or at least companionable.
My daughter has a NG tube right now as well, I tuck the long end up into a light hat, really keeps it out of the way. You may have already tried it, but if not it might let you get a little sleep!
Heather, how are you guys doing? Don’t mean to bug you with everything else going on…just know that we’re thinking of you.
Ditto
This is absolutely the hardest thing I have ever done. For every bit of progress Charlie makes, he seems to take a leap backward. I will try to post tomorrow (my laptop will just not stay connected to the hospital wifi). There are some videos of some of his therapy on Flickr if you pop over there.
I’ve been thinking of you, Charlie, and the DL. Sending lots of love from WA.