Headed to Philly

So in the midst of transitions to school and our new home, we have been continuing to manage Lilly's infection using potent oral antibiotics.  Her second round of meds was beginning to run dry a few weeks ago, and we had started to stretch out her doses in the hopes of making them last longer.  But sure enough, after being off of them for about 2 days, Lilly began to fever again and complain of pain in all the usual places--tummy, left side of abdomen, left arm, and left side of her lower back, and upper left leg.  Confirmation that, while the antiobiotics are effective at keeping the bacteria at bay and not allowing it to enter her bloodstream, once she no longer has the help of the meds, the bacteria (that are likely colonized on her hardware, where there is no bloodflow) can re-enter her bloodstream and cause her body to fight them with a fever.  So, thankful to have one refill available on her prescription, we quickly picked up some more meds and got on Dr. Campbell's calendar to see how we can address this infection.
 
Lilly and I are headed to Philly this afternoon for some radiology studies on Wednesday the 14th.  We have a room waiting for us at the Ronald McDonald House in New Jersey, just over the bridge from Philly.  I am so thankful to be a quick and hopefully easy 3+ hour drive to CHOP from our new home! 

We will head back up to CHOP next Monday the 19th for an office visit with Dr. Campbell and at that point we'll discuss what he thinks is the best way to address the infection.  She is tentatively scheduled to go to the OR on Wednesday the 21st.  So Tom has taken the whole week off in anticipation of surgery and recovery time, and I have already let her new kindergarten teacher know that Lilly is likely to miss the whole week of school.  She is due for her next expansion soon, too, but I'm not sure if Dr. C will address that at the same time or if we'll be back for the expansion surgery.

Hopefully her week off won't make it hard for her to return to school after she is just beginning to get used to it...but I suspect it will.  We'll cross that bridge when we come to it.  Last night at dinner, she was debating which was the lesser of the evils: going to school or having surgery.  Sheesh!

Tom's folks are coming down to stay with Jared and Anna, so they can stay in their routines, for which we are really grateful.  So glad it's an easier drive to VA than to FL for our parents when we need their help!   

Prayers for Lilly's healing are most appreciated!