A Busy Week of Appointments

It's been an eventful week this week with a lot of changes for Annie. We had...
-New wheelchair seat back molding
-Stool sample results and GI appointment
-Transitioning from IV to oral antibiotics with complications
-Transitional meeting to meet Annie's junior high school team
-Pre-op physical for Annie's dental surgery

First, on Monday, we met with her PT and medical supplier to get her new custom seat back on her wheelchair since her spinal fusion in December.  (Equipment takes a long time to get approved especially when dealing with two insurance companies.) Annie now has a new seat back that is custom molded to her back.  It's different from her previous seat back where a mold was cast and a seat was made to fit the mold.  This seat she got today was created by placing her in her chair with a new flat seat back that had a bag stuffed down inside of it.  The medical supplier then mixed up a solution to create a chemical reaction and poured that solution down into the bag in her seat back.  Then we had Annie sit back in the chair as the chemical reaction took place turning the liquid solution into a foam that holds the shape of Annie's back.  It was a three hour process to get this seat back on her chair, create the molded foam, and make other adjustments to her chair to accommodate this seat back.  But now Annie is so much more comfortable and gets through her school day better, without even needing to get out of her chair when she gets home.

On Tuesday, we met with the medical supplier again to have some swing-away lateral supports changed out on Annie's chair.  When we made the change to the seat back the day before, the new lateral supports that were ordered were way too big, so on Tuesday we met just briefly to get the new smaller laterals on.  Now you can see more of Annie and less of her chair.

By Tuesday, we also were able to find out about Annie's latest stool sample results.  We learned that Annie is negative for c-diff which is great, but her calprotectin (that measures inflammation of the colon) has more than doubled in the last 3-4 weeks, from 525 to 1256!  Because of this, her GI wanted to see her in his office on Thursday.

When we met with the GI yesterday, he was surprised to see that Annie didn't look sick!  We explained that she is happy and otherwise healthy except for the increased diarrhea--about 2-3 episodes a day.  He was prepared to get her scheduled for a colonoscopy, but after seeing that she doesn't have any other symptoms of a colitis flare-up, he wants to wait and see how she does as we transition her from her IV antibiotics to her oral antibiotics this week.

Which leads me to last night... On Wednesday we gave Annie her last doses of her IV antibiotics and last night gave her the first doses of her oral antibiotics--rifampin and levofloxacin.  They are some hard-core antibiotics!  Everything seemed fine and we went to bed a little relieved that we didn't have to run an hour long course of IV meds before bed like we've been doing the last 3 months.  But then around midnight, Annie started vomiting.  We're used to a certain amount of vomit from her, but usually she doesn't empty her stomach as completely as she did last night.

And as a side note, the new rifampin medication is a gritty, dark red solution, so when she threw it all up, her sheets, chux, jammies, pillowcase, and everything was stained red.  We had read the warnings about rifampin turning urine, tears, and saliva red and that those body fluids can be staining, so once she finished vomiting around 2am, we got all her things in the washer right away.

Annie did fine the rest of the night and was happy as she went to school this morning, so we strongly believe her oral antibiotics just don't agree with her.  I called her ID doctor this morning and she has instructed us to stop the rifampin and try giving just the levofloxacin, so we'll see if that still causes vomiting tonight or not.  So we'll be playing a bit of a medicine game this weekend and next week to try to figure out the culprit and find replacements for the drugs she can't tolerate.  The trick will be finding other medications that will give the same broad-spectrum coverage that she needs since we never were able to find out what bacteria we're treating.

We're not thrilled about either the rifampin or levafloxacin.  The rifampin is so staining and already turned her urine red and stools black, which can make it difficult for us to now watch for blood in her stools indicating a colitis flare-up.  The levofloxacin isn't very safe to take long term, but Annie will require it for 9 more months!  It also will make her sunburn easily, so we have to be very careful about her sun exposure--right as summer is upon us.  So hopefully in the next few days we'll figure out a drug regimen we can all feel good about and know she's getting the coverage she needs.

Today Annie's first appointment was at 7:30am to meet with her elementary school team as well as the team from her junior high to plan Annie's day and classes at junior high in the fall.  She will have 8 periods in a day which will be wonderful for her since she likes to be moving and have variety.  The classes she will attend with her peers are Science, Social Studies, Reading, and Chorus.  Then she will go to adaptive classes for PE and Math, and she'll also have a period where she will focus on working towards her specific goals in her IEP.  We're excited to have her in junior high soon and it looks like her new team there will be wonderful!

Finally, today after school is Annie's pre-op physical in preparation for her dental surgery at the end of the month.  It should be a quick and easy appointment fortunately.  This week has been a little overwhelming with everything Annie has had going on. Some weeks her care alone feels like a full-time job with all the appointments and phone calls and paperwork.  We hope we can get her antibiotics figured out soon so next week will be a little more calm!