Monday, November 16, 2015

Week 117: Red alert

This was our week of many appointments.  First, Lemon had his clinic visit on Tuesday.  To no one's surprise, he had gained barely 100g since his last visit, for a rate of 3g/day when our target is 5-10g/day.  Of course this isn't ideal, but his doctor didn't seem overly alarmed.  His feeling was that at least Lemon hadn't lost any weight, between his "experimental phases" and being sick last week.  At least the antibiotics had worked quickly, and his cough was basically gone. 

We are trying a few things to help with weight gain.  First, we increased the dose of ranitidine (an acid reducing medication) that Lemon is on.  He started on that to help raise his intestinal pH so that his enzymes could work better, and we haven't gone up on the dose in over a year. So, maybe we can gain a little ground just by re-optimizing his digestion.  At his next appointment, he's due for an annual chest X-ray, so we're adding on an abdominal X-ray as well, to see if there is any stool built up in his intestines.  Constipation is a very common problem in CF, and even "regular" CF patients sometimes have some build-up.  If we see that on the X-ray, then we'll start him on Mirilax to try and clear it out, which will hopefully increase his appetite by making him feel less full.  As you may imagine, the idea of giving a laxative to a two -year-old fills me with joyful anticipation, but whatever it takes, right?  Finally, we're scheduling an appointment with a specialist at the clinic who may be able to give us some new strategies to encourage Lemon to eat a bit more.  I still hold out hope that since what we have is essentially a behavioral problem, there will be a behavioral solution, and that solution might be more immediate than "wait until he's old enough that the behavior changes."

On Wednesday I took Lime to his 4 month checkup.  He is officially a little teapot, short and stout, being in the 2nd percentile for height but the 20th for weight.  He's growing right on his curve and has all the skills a 4 month old should have (including his first front-to-back rolls).  So, we got a few shots and went home.  Done.  See you in 2 months.  I'm really not used to this!

On Friday, around mid-morning, my phone rang and it was the CF clinic calling.  I thought that was a bit odd, since they don't usually call except automated appointment reminders, and we didn't have any upcoming appointments.  When I answered the phone, it was one of the nurses and I could tell by the tone of her voice that the message wasn't positive.  My mind immediately leaped to the throat culture that was taken on Tuesday.  Had they found something that they didn't want to find?  The nurse asked me how Lemon was feeling, and whether he seemed lethargic.  I said he was doing fine and was pretty much the opposite of lethargic.  She said that was good, because there'd been a mistake and Lemon had been prescribed twice the dose of the antibiotic that he should have received.  Since he was feeling well, the basic message was "no harm, no foul, go down to one dose a day instead of the two we told you to do and everything will be OK."  Deeply reassuring. 

Also deeply reassuring was the fact that this mistake was caught, not by the clinic, but by our insurance company who declined to pay for the prescription since the dose was out of range.  The pharmacy was not thrilled about not being paid, and they called the clinic.  It's sad that this mistake was only caught when there was money on the line, and sad that in spite of an electronic health record with a specific intervention plan detailed in it, that the doctor on call could have made this mistake.  I am quite sure that the electronic health record system used by our hospital popped up an alarm when this prescription was entered, and that the doctor clicked away the alarm without really looking at it because there are a million alarms a day, most of them not meaningful, that he has to get through in order to actually do his job.  So, added to the infinitely long list of tasks for the parents of a kid with a chronic illness is double-checking the dose on prescriptions, especially those done by someone other than our regular doctor.

Just to give Friday the 13th a little added kick, we got the news that Lemon's doctor will be leaving Madison come spring.  This is pretty devastating news for us.  We've seen him at the CF clinic every 6-8 weeks since we moved here, and I have so much respect for his knowledge and approach. We will probably switch to his senior colleague at the clinic, who is also a great doctor, so we will be in good hands.  Still, I wasn't really prepared for this change and am feeling some trepidation about it.  We cling to whatever is familiar and constant, especially when trying to navigate something as difficult CF, and Lemon's doctor has been a constant presence since we moved here.  Mainly I wonder how we will find the bandwidth to navigate one more new thing, but I suppose we will find it somewhere.

At least I did get one reassuring piece of news on Friday--I got my teeth cleaned and everything was fine.  Follow up in 6 months.


1 comment:

  1. What amazing perseverance little Lemon, and the whole family for that matter, has! I'm not sure many adults, could deal with what Lemon is dealing with and remain so positive and upbeat, let alone two year old children. Sounds as if you are the same way; I guess it's true that the apple doesn't fall far from the tree.

    Lonnie Letellier @ U.S. HealthWorks Spokane (South Hill)

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