9 Weeks Down

Last week we took Annie for her regular check-up with her infectious disease doctor and orthopedist.  It has now been 9 weeks that Annie has been on her IV antibiotic regimen to treat the infection she developed after her spinal fusion surgery in December.  We've got the routine of the IV drugs down, and feel like we are usually more careful at sterile techniques when administering drugs and caring for her central line than the nurses that come to do her lab work each week!  We've seen some scary practices recently that Justin has even reported back to the home health company.  Those practices could be potentially fatal to sicker children! Annie's infectious disease doctor, and us as well, are beginning to feel that it might be best to get the central IV line removed sooner rather than later, as the risk of serious infection increases the longer the line is in place.

Annie must keep the central line for IV antibiotics for a minimum of 12 weeks--we're at 9 right now.  So in 3 more weeks, we will transition her from her current IV antibiotics to a new set of oral antibiotics.  We'll leave the central line in for about a week while on the orals just to make sure that the transition goes smoothly without any issues. (The central IV line has to be placed surgically, so we don't want to pull it out only to end up back in the OR to put it back in.)

Annie must remain on the new oral antibiotics for 9 months.  She's currently on Ertapenem and Daptomycin by IV, and will switch to Rifampin and Levaquin orally.  Annie has also been on a decent dose of oral vancomycin to help prevent c-diff from this onslaught of very broad-spectrum antibiotics.  However, since there are no studies in using this much vancomycin over a full year, they are having us cut back on her vancomycin dose to just 3 times a week.  We're a little worried about cutting back on the vanco given Annie's history with c-diff and ulcerative colitis, but we'll try it and see how things go.

A couple weeks ago Annie had a stool sample tested by her GI doctor to monitor her inflammation levels in her colon.  Her calprotectin had increased just slightly from about 460 to 528, which isn't too alarming yet, but we'll repeat that study again next week since cutting back on the vanco.

Annie's stools have been changing lately, which always makes us nervous.  We have seen greater frequency, looser consistency, and much more mucous lately.  Yesterday we also saw a couple small streaks of blood, so we're definitely eager to repeat the stool testing and get her transitioned to a new antibiotic regimen in hopes that her colon will stabilize.  The new oral antibiotic drug regimen will still have very broad-spectrum coverage, but it will be just slightly narrower than her current IV regimen, so hopefully that will help at least just a little. 

Managing her GI symptoms and working to prevent c-diff and colitis flare-ups are most likely to be our biggest challenges over the next 9 months.  If her GI issues continue, she could require even more antibiotics if she does end up developing a c-diff infection, or she might require steroids to help calm the increasing inflammation in her colon.  Steroids would cause her body to become immunosuppressed which isn't a good thing when her body is trying to fight off a major infection.  So we continue to monitor her BMs closely and her GI doctor is excellent about monitoring her closely as well.

Annie's orthopedist thought she's looking great from his standpoint.  He wants to continue to monitor her every few months though.  We continue to see Annie's infectious disease doctor every 3 weeks, with lab work done every week.  The new oral drugs will require lab work only every 10-15 days, but without a central line in place, she'll have to get poked for every one of those lab draws.  :(  Fortunately, she got used to those as a little baby and she's pretty brave showing only a little flinch.  There's been some great benefits to having her central line in place!

We greatly appreciate continued prayers for Annie.  The past several weeks on her IV drugs have been fairly uneventful, but they are now starting to affect her GI tract as we suspected they eventually might.  And we are still only at the beginning of this long road, but we're still just taking one week at a time.