Monday, April 13, 2015

Week 86: Too interesting

Ah, I reflect fondly on the middle of last week, when I was wondering what on earth I would write about this week, as everything seemed lined up for a pretty uneventful stretch.  I went to a really interesting talk by Robert Wachter about the bumpy start for electronic health records (EHR), so I thought maybe I would write about that, and post some cute pictures of Lemon.  Instead, CF has once again made our lives too interesting for my taste, so for the moment I will refer you to Dr. Wachter's recently published book on EHR and tell you what else has been going on.

Papa Bear was out of town this week, so Lemon and I had lots of time together for mother-son bonding.  We had one fairly unpleasant task to take care of, which was to get some of his blood drawn for various lab tests.  For us, this requires a separate visit to the clinic, because our regular visits are all in the afternoon, and by the time they finally end, the lab has always closed for the day.  So, on Wednesday afternoon, we headed over and Lemon took the blood draw like an absolute champ. 

The two things we were looking at with these labs were Lemon's iron and vitamin D levels, both of which have always been low.  The results are in now, and the good news is that the iron supplement that we added to his regimen is actually doing something beyond staining his teeth.  His iron levels are now within the normal range (admittedly at the low end of it, but still), and his pediatrician is satisfied with that so we can just keep doing what we're doing there.  Unfortunately, his vitamin D levels were still low, so we are upping his daily dose from 1000IU to 2000IU, and we'll recheck that in a few months to see if the extra supplementation gets us to where we need to be.

Then, on Thursday, Lemon sneezed.  This may not sound like much, but to those of us who care for him on a daily basis, this single sound put us on high alert.  We have been down this path often enough to know where it leads.  Sure enough, the sneeze was followed by the runny nose, which was followed by the onset of a dry cough, which turned into a wet cough by this morning.  I sent Lemon's doctor an email first thing this morning saying that I thought we were probably going to need more antibiotics soon, and asking if he wanted to try anything different this time, since we just came off a solid month on Augmentin 10 days ago. 

The clinic called me back an hour later asking if I could bring Lemon in to see them this afternoon.  We have been there so much lately that as soon as Lemon got to the parking lot, he said "Clinic!  Doctor!"  And, everyone there from the receptionists onward knows his name.  In any case, his care team is very concerned as this is the 6th time he has needed antibiotics this "winter," where in our family winter now includes April.  They thought about admitting him to the hospital today to start a run of IV antibiotics, but his doctor thought we could try one more course of oral drugs first to see if we can actually clear out whatever is giving him so much trouble.  So, we are trying two weeks of Bactrim with chest PT 3 times per day throughout.  We have another appointment scheduled for two days after the Bactrim ends, and if he has any symptoms that they don't like at that appointment, they will admit him straight from there to the inpatient ward.  I was told to pack a bag as though we were going to be admitted and bring it with me to the appointment, so I think they mean business. 

All this song and dance just serves as a reminder that we desperately need medicines that treat the actual cause of CF, not just the bacterial infections that arise as a consequence of the underlying problem.  The Cystic Fibrosis Foundation has been leading the charge in this regard, and there are some incredibly promising new drugs that could treat the root cause of Lemon's CF entering Phase III trials later this year.  Research, and especially research involving actual patients, is incredibly expensive.  Please help us ensure that these new drugs become a reality for all CF patients in the immediate future by clicking here to make a donation to our team as part of the Great Strides walk in Madison this year.  To those of you who have already made such generous contributions, thank you so much for your support!

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