In Limbo

Exactly one month from today, I should be back in Chicago, back at Highland Park Hospital, and back in surgery.  I say "should" because we've had another bump in the road, and it's now uncertain whether we'll be able to go forward on May 10, as we'd planned. 

To remind you, my first expansion (just 3 months ago) was cut very short when I became infected with a bacteria called Pseudomonas.  Dr. Bauer believes this was related to an ear infection I had a couple of weeks before my first surgery.  Because of that, he instructed that my ears need to be infection-free for at least one month prior to this upcoming surgery, or we would have to postpone.

To get through this month in complete health, mom and dad decided that there would be no more contact with other kids or the public in general for my big sis and me.  That means no school for sis, no swim lessons, no playdates, no shopping... pretty much no going out.  We started this routine 6 weeks prior to surgery, and BAM, the next day, sis and I both got a cold!  Two days later, my doc checked my ears and.... they were not infected, but one of them was full of fluid.  I started an antibiotic right away to put a preventive strike on infection, and mom contacted Dr. Bauer.

Dr. Bauer quickly consulted an ENT and by the next day (which was a Saturday by the way -- how awesome are we to have a surgeon who keeps in touch with patients on the weekends?!?), Dr. B strongly suggested that I have ear tubes placed.  His initial email actually indicated that this should be done 2-3 weeks prior to surgery, which didn't give us much time at all.  Mom brought up the possibility of having the tubes placed at the same time as the expanders, and Dr. B agreed that would be a good idea.  The question is, can he arrange it in time?

In actuality, I don't really need ear tubes.  I haven't had enough ear infections to make me an obvious candidate for this procedure.  But, it seems that each time we near my expansion surgeries, I tend to get them, and as we saw in the past, it can cause significant complications.  While we can take every action to keep me from getting sick again (hopefully), another obstacle we face is that I tend to get ear infections when teething.  And, as luck would have it, I have 4 teeth coming in right now.  So, this is more of a preventive measure than anything else.  Mom and dad are ok with that, as long as it doesn't involve me going under more anesthesia and having yet another surgery.   

So what's the problem?  Well it has been a week since the idea of doubling up on surgeries has been introduced and we still don't know if it's actually going to happen.  There are so many questions to answer here.... Will the Chicago ENT agree to place tubes, given my history?  If yes, is he available on May 10, when I am already scheduled for surgery?  If he won't place tubes, do we need to have it done here in Arizona before we can continue my expansions?  Can we get that done early enough to proceed with surgery in May?  The list goes on.  Suffice it to say that we are in limbo right now, not knowing what is going to happen one month from today. 

In the meantime, Dr. B has instructed that I should remain on antibiotics until my May 10 surgery date.  This will help ensure that my ears do not become infected, which at the least will reduce the risk of complications this next go-round.  We continue the vinegar baths as well, and sis and I will remain in "quarantine" until my surgery or the time we find out it is postponed, if that happens.

This is frustrating, but we also realize it's just the way this game is played.  God has put me in Dr. Bauer's well-skilled hands, and we trust every opinion he provides us.  I have had the good fortune of seeing Dr. Bauer's work first-hand over the last few weeks, as some of my friends who had expander surgery with me back in January have made it though their expansions and to removal, and Dr. Bauer's work is absolutely beautiful.  He is truly a miracle worker.  I know that someday, it will be my turn.  I try to wait patiently.  We all try.