Shira’s favorite spot in the house is a carpeted nook to access the attic that she calls the Clubhouse. There’s official membership documents, maps and directions, and now a newsletter.
Since Eliana has been home from the NICU we’ve had 16 hours a day of nursing help (when the nurses actually get here…but that’s another post). But last week we got a letter telling us that our hours were going to be substantially reduced. We could fight it, but had to get the paperwork in within 10 days in order to keep these hours while we fight the decision.
Of course any sort of insurance stuff is freakishly complicated, so I broke out my best Hank and went to work. Read and re-read the letter. Research online. Talk to the nursing company. Contact a pro bono service that specializes in health law and insurance matters. Then…make the call.
When people ask me technical questions I don’t like to just give the answer — I like to cite chapter and verse. If I look it up I know I’m right, and if I can give you a citation it’s hard for you to think that I don’t know what I’m talking about.
The first time Ms. Customer Service said “I don’t think you can do that” I convinced her to check with someone else who could tell her I was right. But the second time, when she confidently told me “you can’t do that at this stage of the process” I couldn’t hold back.
Some parents might have trusted her and walked away. Others might have yelled that they knew they were right. I, however, patiently read her the URL of the company’s website that recited what I had just told her. She’d been Hanked.
Been doing that a lot recently…
The surgery was finally completed after about 4 hours – the time they told us it would take – and the surgeon came out to tell us everything went pretty well. Yay.
And apparently we had enough frequent flier miles that they gave us a free surgical upgrade. Along with the fundoplication (still love that word) and G-tube, they went ahead and stitched up her umbilical hernia while they were there. So now we won’t get to see her bellybutton blow up like a little balloon when she cries. Oh well…you win some, you lose some.
But overall, things are good. She’s going to be on some pain meds for awhile (she does have a bellybutton to chest incision, after all) and probably won’t eat for the next 48 hours or so. Saturday will probably see her feeding restarted, and we’ll get to dialysis as necessary. Probably looking at 4-5 days or so, but it could be worse, right?
So here we are, back at the Hershey Medical Center, in the Children’s Hospital, awaiting Eliana’s G-tube surgery. They’re a little late (I mean…really…it is a hospital so why wouldn’t they be?). So we’ve got some time on our hands and I figured what better than to live blog the morning. Some random thoughts, in no particular order:
I’m typing this on a wireless keyboard synced to a 50 inch TV hanging on the wall in her pre-op room. Pretty snazzy, huh? And we’re not even in her overnight room. My hopes are up, so I’m expecting a stocked kitchenette and DVD library along with a king sized bed.
** They gave Eliana a teeny-tiny gown that ties in the front. Guess babies don’t get out of the crazy hospital gown business.
** She also got a pair of fuzzy booties, just like adults. They have grippy rubber treads on the bottom too. Apparently they’ve had trouble with 6 month old kids slipping as they’ve tried to run out of the room?
** Part of her surgery is called a Nissen Fundoplication (can’t easily link from here so look it up yourself). How cool is the word Fundoplication? As Dave Barry might say…that would be a good name for a rock band.
** If I’d just gone over 12 hours without food I bet I’d be even grumpier than Eliana is right now.
** I think I just became one of those people who blogs everything. Not sure if I like it.
** Ray Charles still works his magic on a grumpy baby. Along with the blogging we’ve called up YouTube to listen to some of Mr. Charles’s greatest hits and it calmed her down just like at home. We should try some BB King; if anyone should have the blues it would be her.
** When the surgery is over they’ll track us down with…wait for it…a pager. Cool.
Alrighty…OR nurses are here so we’ll be off to answer some more questions.
For about the last 4 months Eliana has been fed primarily through a feeding tube. Specifically, it’s a nasojejunal (or NJ) tube that goes in a nostril, down the back of her throat through her esophagus, into and through her stomach and into the second part of her intestines (the jejunum). Feeding through one of these tubes is kind of like when you laugh too hard and snort milk out of your nose, but in reverse. And through a tiny silicone tube that’s attached to your face with wads of tape.
One of the biggest hassle of NJ tubes is that they have to be inserted in the hospital so the final location can be verified by X-ray. Why does this matter? Because every time the NJ tube gets dislocated – usually by a flailing baby annoyedly ripping at the aforementioned tape wads – it means a trip to the ER. On average, those trips end up taking about 4 hours or so. So as you can imagine, we’ve done our best to keep those freakin’ tubes in place.
Despite our best efforts and those of our home nurses, Eliana’s NJ tube has come out 6 times in the 3 months since she’s been home. That’s 5 visits to the hospital just for tube replacement (#6 today was replaced differently – I’ll get to that in a moment), and just like other wacky things that have become routine it’s starting to just become a cost of doing business. We’ve actually had the same nursing staff a couple of times, and we’ve got some of the ER procedures down to the point that it just feels like we’re walking in and saying “Lerner…table for 2.”
Today at work I got a text from Amy saying that the tube had spontaneously popped out around lunch time. But this time the nurse replaced the NJ tube with an NG (nasogastric) tube that just goes right into the stomach and can be done at home. Why? Because on January 30 Eliana is scheduled to be admitted to the hospital to have surgery that will place a gastric tube (G tube; sometimes referred to as a PEG tube or a button) that will go directly from her abdomen right into her stomach. No more N means we’ll be rid of the tube in her nose, which will eliminate a lot of the irritation that she’s feeling right now.
So instead of a 2 foot yellow tube dangling out of her nose and taped to her face she’ll have a little port like the stem you use to blow up a beach ball hidden under her clothes. And though it sounds a bit gross, if that little port ever comes loose – which it will – we can actually replace it here at the house.
Yay! And double-yay!
Does this change anything about her overall condition? No. But overall quality of life – for her and us – should be soooooo much easier once this is in and we don’t have to worry about the taping and the poking and the placing and all that jazz. So while I’m sure we’ll still have our fair share of emergency room visits for other things in the future, we’ll graciously give up the reserved table as soon as we can. She’ll probably be in the hospital through the weekend, but if all goes well we will be able to report on the G tube around the beginning of next week.
PS: As you might guess, we’ve had more than a few questions about her feeding tube and other tubes, which we’re more than happy to answer. But we also know that not everyone feels comfortable asking questions. Take a look at the Feeding Tube Awareness Foundation for some common “tubie” questions. We’ve started wearing their “I heart a Tubie” bracelets to show support for our own little tubie. Just sayin’…
While we are lucky to have such good coverage for Eliana, it’s not without it’s headaches. We got a letter last week saying our nursing coverage is under review and we have until January 9 to send the insurance company a list of information for them to consider continuing the number of hours we receive. These hours are based on work hours, both mine and Hank’s, Eliana’s care needs, and the other kid who lives in the house–she needs some care too every now and then.
That’s how I understand how they decide if you qualify for in-home nursing coverage anyway. Nobody seems to know exactly how it works, and we’ve heard so many different opinions, we don’t know what to believe. We do know that it’s tough to sleep at night when we don’t have a nurse and worry that Eliana is going to get tangled up now that she’s starting to roll or pull out her NJ tube, which leaves us going to the ER the next day to have it reinserted.
The consensus on insurance coverage for nursing care is that a mom who works gets more nursing help. This makes sense, except when you consider that it would be nearly impossible for me to work 40 hours a week even if I wanted to. Someone has to clean the house, cook supper, set up and start dialysis and Eliana’s overnight feed, unhook her from the machines in the morning, take her to doctor’s appointments, make endless phone calls, and send emails about her care. Hank does all of these things sometimes, but hey, he does have to work full time, so I am the primary caretaker.
Here’s how I spent one recent morning: I put gas in the car and picked up some groceries after Eliana’s nurse got here and everyone got off to school and work. (Eliana had an early doctor’s appointment the next morning, so the car needed gas to get to the appointment.) I emptied the dishwasher, made Eliana’s food, straightened up the home office, checked email, had a snack, and tested out Word 2013 to see how it will work for editing. Now the IV nurse is on her way to check Eliana’s dressing, followed by early intervention’s physical therapist. After that, I carved out some time to work for two hours or so. Because I hadn’t yet.
I called the medical assistance office for the second time–they’re supposed to cover the Medicare premium but have not and we got the bill. Last time I got through to a real live person who put me through to a random voice mail. Now I can’t seem to ever reach a person, just an automated response that said, “Your call is important to us, but all of our staff is busy right now. Please call back later.” Somehow, I don’t feel that my call is important to them. Let’s hope these hassles are not a sign of what’s to come.