Letters from Pemberley

Derek and I took Susie in for her pre-op visit today.  The good news: her second hearing test showed that her hearing has not deteriorated since the last one.  A “healthy” ear is between 0-25.  Her left ear scored 11 and her right ear scored 38.  The audiologist noted that her inner ear scores are still normal.

We’ll show up at the hospital at 5:30 am.  Surgery is scheduled for 7, but by the time the anesthesia starts and all, they probably won’t start the surgery itself until more like 7:30 or so.  Susie’s surgery will be broadcast to observing doctors in another room, so more people get to learn from her ear!  Total time should be around 3 hours.  They will need to shave a bit of her hair right behind her ear, so she’ll be the coolest hipster in the family, sporting the one sided shave look!

Dr. Luxford did tell us that congenital cholesteatomas like hers are more likely to grow back.  There is a chance that we’ll come back next year and it will have all grown back, so he’s going to try to take generous margins so that he gets it all.  The nurse told us she’ll probably be really sleepy after the surgery, and we might be released 2-3 pm.  I’ll get to wash her hair on Saturday (with a cotton ball and vaseline sealing her ear), and she’ll start taking drops to dissolve the packing inside her ear after three weeks.  Dr. Luxford referred us to an ENT colleage at University of Iowa who will do the rest of her post-op visits and will advise Dr. Luxford on her progress as we figure out when to schedule the next stage of surgery next year.  The nurse reassured us that this is all they do, all day, every day.  We’re in good hands.

Susie’s surgery is scheduled for next Thursday, the 13th, so I’m doing my best to get her in the water and swimming pretty much every day until then.  After the surgery, she won’t be able to get her head wet for 3 months (not sure how washing hair will go), so we’ve got to get it in now.  Ironically, I feel like she had a huge break-through in swimming ability yesterday, going into the deep end without her floatie.  C’est la vie.

Yesterday we saw Dr. Vallance for Susie’s pre-op physical.  I was almost in tears thanking Dr. Vallance for noticing and catching this before it was too late to fix!  She had another long look at it and commented that while she has of course seen them in textbooks, this was her first time seeing one in real life in a patient!  She even called Dr. Rubin in to take a look, too.  We told Susie that she was teaching her doctors this time instead of the other way around!  This in a nutshell is why we do annual well-checks–to have doctors catch things that we parents haven’t noticed were a problem yet.  Dr. Vallance said that while this was her first cholesteatoma (they are extremely rare), she can’t tell me how many thyroid issues she has caught early during a well-check.  She also told us that she has had ear surgery herself (for a different issue) and that she has a titanium rod in her ear!  We looked back through Susie’s hearing test history (as that is the sort of thing I don’t bother writing down in their baby books, though maybe I should start), and apparently she actually passed her hearing tests through age 4.  So since she only failed her 5 year one (with waxy ears) and this year, we can extrapolate that the tumor hasn’t been an issue for more than a year or two at the most.  We certainly know that it’s only been visible on the eardrum in the past year or Dr. Vallance would have caught it at the 5 year check.  She had lots of advice for me as a doctor, a mother (her boys are a little older than Tommy), and an ear surgery patient herself.  She also told me that while general anaesthesia sounds scary, the doctors actually have more control than they do with local, and the risk factors are much lower after a child turns one.  Since Derek and I have both been under general for surgery and had no reactions other than general wooziness afterwards, Dr. Vallance thinks we do not need to worry about having Q under.  If they take the graft from her facial nerve to rebuild her ear drum, we shouldn’t be surprised if her sense of taste changes a bit for a little while, too.  I feel much calmer–and I am feeling more prepared going in to talk to Dr. Luxford at the pre-surgery consultation next Tuesday.  The bad news of the day was that Susie needs her blood drawn, we couldn’t get in at a convenient time while we were already in town, and of course there are no places to do that in Malibu.  So for my birthday, while Derek’s out of town, we’re going to go back in and give blood (Dr. Vallance prescribed her a numbing patch to wear on the way over) and then party in Westlake Village eating things that I didn’t cook myself.  No one can say that we Mullers don’t know how to have a good time.