Monday, December 19, 2016

Week 174: Breaking through

Another week, a few more swings of the pendulum. Uncle Jared came for a visit. We got some more snow, and it was really cold. In other words, very reminiscent of the vacations our family used to take in New Hampshire, were discussions of what to do and when to do it often devolved into second and third cups of coffee and naps. Winter perfection.

On Wednesday, we had a clinic visit that marked 6 weeks since Lemon was in the hospital. He was still at baseline, had gained another pound and a half, and was basically running laps of the exam room while I talked to the nurse practitioner. So that all seemed very promising.

As long as I was there in person, I followed up on our second opinion and our inhaled antibiotics. In response to my question about the second opinion and the form that they said they would fill out, I got some surprised looks and a sort of "Oh, did we say we'd do something? Maybe we can do something. I would check with the guy who would be the one to do something if this is something that we do, but he's at lunch right now." Excellent.

The story for the inhaled antibiotics is a bit more involved. The nurse checked their computer system and saw that the pulmonologist did put through the new prescription for the inhaled antibiotics the previous Friday. Armed with that information, I called the pharmacy again, and when they were told that the prescription was there and had been there since the previous week, magically they were able to discover it. I then called the insurance company who did a test claim and showed that it would be covered. I called the pharmacy back again, told them that it would be covered and that they could place the order any time, and they said they would call me back to schedule the delivery. Which they never did. So I called them back again, and they said that, yes, indeed, they had put through the prescription for the medication and it had cleared.  But. The medication is delivered through a special proprietary nebulizer. Which needs its own prescription. And the company wouldn't ship the medication to a new user without the nebulizer. Back on email to the clinic asking that they pulmnologist send in an additional prescription for the nebulizer. Which he did on Friday, but the pharmacy doesn't work weekends.

More calls this morning. Could we get it sent out today (reasons for urgency described below)? Well, no, they had not received a HIPAA form back from us. Checked with Papa Bear, who is the paperwork master. He had filled it out and sent it by both email and fax. More calls. We can't call the manufacturer directly (they're the ones who handle the nebulizer, not the insurance company or the pharmacy). But we called the pharmacy who called the manufacturer, who, upon being told that they had in fact received the form were magically able to see it and approve it. And now, not 25 short days since we began our quest to get this medication, it has been shipped out and should be arriving at our house tomorrow. I don't want to declare victory until it is actually in my hands, but I feel like we're getting very close!

So, in the mean time...Lemon's cough returned again. He was coughing a little on Friday, and more and more through the day on Saturday. By late afternoon Saturday it was clear that we needed to do something. Of course our plan was to try the inhaled antibiotic if the cough came back, but we didn't have it yet (see above). So we called the pulmnologist on call, who gave us a prescription for a few weeks of augmentin (being a rational human being, he didn't see the point of another round of levofloxacin). He also gave us a couple of days of prednisone to see if really whacking at the inflammation in Lemon's lungs could help. The combination of the augmentin and prednisone has at least got things back under control, but it's pretty clear that oral antibiotics are not going to kill this thing (I've lost count, but I think there's been some form of oral antibiotic in his system every week save about 4 since mid-September, and for 1.5 of those 4 he was on IV antibiotics so that doesn't exactly count as a break).

Hopefully, starting tomorrow, we can try the inhaled antibiotics and see what that does. Unfortunately, if that doesn't work, our next option is another round of IVs. We'll decide in a week or so--conveniently timed for the holidays and travel and whatnot.

In other news, we had our 6-month follow-up with the orthopedist today to check on Lemon's formerly broken arm (Remember that? Yeah, me neither.).  It healed perfectly. Glad something's going right.


  1. How's Lime doing? I don't see any updates On him?

  2. Oh Dena. How is your other son doing?