Our Quiverfull - The Vancomycin Follies

Mar. 6, 2008

The Vancomycin Follies

It's official. Vancomycin should come with a warning from the Surgeon General: "Warning! Vancomycin may be hazardous to your MENTAL heath." I know it has been hazardous to my mental health, and I wish someone had warned ME! :-)

My mental decline began when I got the phone call from ID the other day saying that Noah still has C. Diff. We'd been hoping - really, really hoping - that the second round of Flagyl had done the trick. C. Diff toxins are incredibly nasty and capable of performing all sorts of awful stunts in the human body. We had also wanted the Flagyl to work because we DIDN'T want to resort to vanc. Noah's had it so much (always IV) and because he will probably need it in the future, resistance is an issue. I'll be honest - this was enough to get me a bit stressed out and, well, worried.

I faced the worry, went to God, and was ready to move on . . . to the pharmacy, that is. When the lady handed me the little bag of capsules and asked me for $150, I smiled and figured she had forgotten to factor in our insurance. Nope. We paid $150 for a week of oral vanc. Insurance had paid $586. Oral vanc. must be soooome stuff to command a price like that for a week. It was probably silly of me to be shocked, because goodness knows that is a drop in the bucket compared to things like TPN, but you need to remember that my mental faculties were already compromised. :-)

The instructions on the prescription said to open the capsules and put one in Noah's g-tube every six hours. We weren't sure if that was every six hours as in "set your alarm and get up in the middle of the night and live like a zombie 'til the c. diff. is gone," or if it meant "get four doses a day from when you get up until you go to bed." We decided to wait overnight and ask ID yesterday. I was happy (oh, so happy) to hear that it was the latter. I really don't love doing meds in the middle of the night!

The rest seemed incredibly straightforward - just pop the little critters open, mix with water,shoot in the g-tube. No problem . . . . or so I thought. I pried open one of these priceless little capsules last night and tried to dump the powder into my little cup of water. There was no powder. The capsule appeared to be filled with concrete. I tried to no avail to dissolve the entire thing in water and just ended up with a gooey (expensive) mess.

I called the pharmacist this morning. She confidently told me she would put me on hold for a minute and get right back to me. Quite some time later she got back on the line (sounding slightly less confident) and told me that A) all of their capsules were also rock-hard, B) she had called some other pharmacists and THEIR capsules were rock hard, and C) yes, indeed, it would seem difficult to put these into a g-tube, but she was going to put me back on hold and figure something out. Another long wait on hold. I read No Greater Joy and nursed the baby before a decidedly shaken-sounding pharmacist got back on the line and told me that she and her staff had been experimenting with vanc capsules and pretty much only succeeded in shattering them. We agreed to have her look into it and just call me back.

When she called back, she sounded more like herself and told me that they had done some research on vanc. The capsules are indeed supposed to be filled with concrete (sorry, the medical term is "Really, Really Hard Stuff."). She carefully read her Top Secret Pharmacists Eyes Only instructions to me. "All" I had to do was to use a sharp implement to cut away the capsule material (those who know me, Kate the Klutz, are already trembling), then put the Really Really Hard Stuff in hot water for 30 minutes. I was tickled pink. After all, how hard could this be if the instructions said to do it? I grabbed some sharp scissors, a sharp knife, and a cutting board; made James promise to take me to the ER if I cut my finger off; and I went to it.

A few minutes later my dining room was covered in teensy shards of very expensive Really Really Hard Stuff with bits of capsule coating stuff still attached to them. On a positive note, I did still have all of my fingers. I was hesitant to destroy more than a couple of the capsules given their price tag, so I conceded defeat, grabbed the remaining capsules and as many shards as I could find (they can fly pretty far) and headed to the pharmacy.

The pharmacist seemed to feel my pain. I may have had a slightly deranged gleam in my eyes. At any rate, she quickly offered to "just peel off the capsule coating real quick" for me. That sounded like a very good plan so I sat down with Mary Faith to wait. I held her. I nursed her. I chatted with passers-by about how very cute she is, etc. The line at the pharmacy began to grow longer since at least one pharmacist was tied up with my capsules. Mary Faith finally fell asleep on my shoulder and I fell asleep soon after.

An hour later I woke up. At first I worried that I had slept through my name being called, but I needn't have worried. About 15 minutes later the pharmacist came up to me holding 40 ziplock bags,each containing assorted bits of Really Really Hard Stuff - minus the capsule coating. She DEFINITELY had a deranged gleam in her eyes when she told me that she never quite expected it to take so long. She assured me that each bag held all of the necessary shards to equal one dose of vanc.

She also told me that she really hoped that one week of vanc would be all that was needed to wipe out Noah's C. Diff.

I am absolutely positive that she meant it.

Love,
Kate

P.S. THANK YOU all for your ideas and offers regarding clothes for Noah! I will be checking out the links and contacting some of you in the next couple of days. I've gotten some terrific new leads to follow and I am very excited. It is wonderful to see that there are larger-size clothes available! Some of you have tube-fed children and may be interested in this site: www.tummytunnels.com We looked at it when Noah was tube-fed but didn't have a chance to order before he ended up switching to TPN. Unfortunately, the nature of his central line and TPN means that tummy tunnels, buttonholes, cutting off the feet of his jammies, etc. won't work. His line extends out of his chest. The HUGE TPN bag has a line that can't be detached from the bag once we spike it in. The end of the bag line is attached to his central line when we hook him up. Even if it worked to thread the bag line through a button hole or the feet of a sleeper, we would have to disconnect and re-access his line to undress him. Every time we access the line we need to flush with saline and we increase the risk of infection. It is hard to unhook and rehook his TPN without violating sterile procedure and needing to redo some part of the tubing/valves/etc. I don't know if that makes sense, but this works a lot differently than tube feeding in terms of how the lines relate to each other. However, maybe some of those types of ideas will help moms with feeding tubes to deal with!!

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Comments

Mar. 6, 2008 - Untitled Comment

Posted by lahbluebonnet

We are still praying for all of you! I don't comment much but I read every entry! I've been through my share of med issues, but this definitely takes the cake. I will be praying that these "newly released" capsules will do the trick!
Blessings,
Laurie