Can't Catch a Break!

Annie hasn't been back to school since her surgery a week ago last Wednesday.  We thought she'd be able to return to school last Monday as a happy, healthy, and much drier child, but of course life is never that predictable.  Annie hasn't been doing very well since about last Sunday.  Her salivary gland ablation surgery left her with lots of swelling and thick secretions that have been difficult for her to tolerate, causing almost constant coughing and vomiting bile.  We've been suctioning her regularly since surgery, even throughout the night. 

However, it was about Sunday when her cough started getting weaker and weaker and she just hasn't been able to clear all the junk that's collecting in her throat.  We usually just suction it out, but all the congestion is too deep for us to suction anymore--we just don't get anything.  Usually when we suction her, it also makes her kind of gag and cough up what's in there, but we can't even get her to cough or gag with the suction.  She's just not her usual self and the weak, congested cough is continuing.  Her drooling is almost just as bad as ever, but we're trying to not get too discouraged about that yet since we think she must have some other bug that has increased all her mucous and phlegm. 

We met with her GI on Tuesday, originally planning to discuss how to get Annie off prednisone which has been managing her ulcerative colitis.  Fortunately, we were able to wean her off the prednisone in preparation for her surgeries, and amazingly enough we've been able to keep her off the prednisone.  She still continues to have 1-3 very loose stools a day, but that's a huge improvement from the 8-12 she used to have without prednisone.  Blood in the stool has also been absent, even without prednisone, so we're hoping she can maintain this status.  The GI did say though that if she has another flare up with more frequent stools or blood present, Annie will most likely have to start taking stronger immunosuppressants--drugs that are typically used for chemotherapy.  That's made us very nervous, so we're praying that we don't have to go down that road.

On Tuesday I also had Annie into the pediatrician for her post-op follow-up, her UTI follow-up, and to talk to him about her weak cough, congested airway, and us starting to worry about pneumonia.  Her UA showed a possibility that her UTI is still present even after her full 10 day course of antibiotics, so we're waiting to see how the culture comes back.  The doctor said her lungs sound ok, like the congestion hasn't settled low enough that she has pneumonia yet, but he's concerned about her.  He wanted to start her on antibiotics to help prevent pneumonia, but with the urine culture still pending and the high risk of c-diff reoccurring, I asked him if we could hold off a little longer. 

So we should hear today or tomorrow about whether she needs another round of antibiotics for a UTI, and if her cough remains unproductive and weak by next Tuesday, we'll take her for a chest x-ray before considering antiobiotics for pneumonia since those are more likely to cause c-diff.  We also have an appointment next Tuesday with her pulmonologist, originally scheduled as her annual CPAP checkup, but it will be nice to talk to him about our pneumonia concerns as well. 

And as if it weren't enough to have Annie sick, Justin and I have each battled a short but nasty 24 hour bug this week.  At least the snow has finally melted--now I'm just hoping for some blue skies, sunshine, and temperatures to come out of the 30s and 40s.  We know to enjoy spring and summer when they eventually come, because in Nebraska they sure don't last very long!