Tuesday, April 10, 2012

Aw Crap

It's just one thing after another in our family right now.

This morning the nurse coordinator from the CF Clinic called me.  When the number popped up on my caller ID on my cell, I knew it was from Hershey, but I thought it was the nutritionist checking in per our conversation at our last visit.  Instead, I was getting a call about Judith's latest throat cultures.  Judith cultured positive for pseudomonas this time.

Oh shit.

I know this is a common occurrence in CF patients, but it's not really something you want to hear that a culture came back positive for.  They have the potential to cause a lot of problems, and they can be hard to treat.  But there are meds that can treat it, and how long she will need to be on them depends on how well she responds to them.

We did have the opportunity to participate in a study with Judith (provided she would actually qualify).  I'm all for participation in studies - heck, Judith is the result of a PCOS study!  However, right now, I decided to opt out and wait until she's a little older before enrolling her into studies.  Considering she's only about 13.5 months adjusted and we have the preemie issues we're still dealing with, I felt it was better to go with a drug that we know will work and has already been FDA approved.

2 scripts later and a few phone calls from the clinic to the pharmacy and medical supplier, we are set to get a nebulizer for Judith and a 28 day supply of TOBI (Tobramycin Inhalation Solution, USP) for round 1 of treatments.  CVS was able to order the meds, and I can get them tomorrow.  Her nebulizer should be delivered tomorrow as well, provided the insurance company approves it quickly.  After the 28 day cycle, she'll need to have another throat culture - if she tests negative, we can stop treatments, but if she tests positive we'll have to do another 28 day cycle and will keep repeating the process until she cultures negative.  Hopefully she'll culture negative in a cycle or 2.

Honestly, I've been bracing myself for the possibility of a nebulizer for a while now.  I know that we've been extremely lucky to have avoided it thus far: Judith's 16 months old, and between the preemie issues and the CF it's pretty damned amazing that she hasn't needed something like this sooner.

I can't wait to see what the total cost for the neb and the TOBI are going to be.

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