Infectious Diseases Follow-up

Annie had a follow-up with her infectious diseases doctor today. It was a quick and rather uneventful appointment, fortunately.  The doctor said that as long as Annie is tolerating her IV meds well, the plan is to continue to keep her on them.  After a minimum of 12 weeks they might consider transitioning her onto oral meds since at that point the risk of infection in her central IV line increases, which can be a very serious problem.  But so far she is tolerating all the new meds just fine and we even have our routine down of giving them to her!  We don’t even need our little cheat sheet anymore with the summary of instructions.  We both are fully competent at administering IV medications now!  

Part of me thinks we should keep her on the IV meds as long as she can tolerate just because they appear to be working well with no negative side effects so far.  I don’t really want to rock the boat with oral meds yet. But the one big bonus of transitioning to orals (beside eliminating the risk of her central line getting infected) is that removing the central line would make bathing Annie SO much easier!  It’s always difficult to bath her, but with the added central line now that has to be kept dry, it makes bathing even more difficult than normal.   

We’ve had to start giving Annie sponge-type baths in her bath chair, but the only way for us to wash her hair and keep her line dry, is by washing her hair in the kitchen with her in her wheelchair.  We tip her back in her wheelchair as far back as she can go, take off her head rest, and place a bucket under her head.  We pour water over her hair with a cup, and the bucket catches the water (or at least some of it).  The rest of the water we mop up off the floor.  But that really is just a minor inconvenience, really.  We can definitely tolerate these new bathing strategies in order to allow her to receive the best medications that will treat the infection in her back.   

The infectious disease doctor is still following Annie very closely.  We’ll return in another three weeks to see her, as well as the orthopedist too.  And Annie continues to have weekly blood work done as well to monitor all her lab values.  Annie is also starting to tolerate longer days at school, so life seems to be getting back into a routine again.  We're so grateful for calmer periods in life like this.  Often we forget what a blessing it is just to be able to have dinner all together as a family, or other little things like that.  And with spring around the corner, it's nice to have things looking up!