Tuesday, April 19, 2011

Cautious Optimism

Surgery on Friday was a raging success. In terms of Roo waking up after anesthesia, coming home without having to be admitted to the hospital, and no Stridor-induced trips to the ER, things couldn't have gone any better. 

On the EoE front, the physical appearance of his esophagus was everything it ought to be - clean, bubble gum pink, free of white plaques and furrows, and best of all, remember those pesky little bumps and polyps that had us on edge for three months?  They are no more!  We're still waiting on the biopsy results which should be back some time this week but the physical evidence was encouraging.  Ultimately the biopsies will tell the full story but it's looking like the budesonide (aka Pulmicort) might be working for him.  I still don't quite believe it.  As we know, shoes tend to drop around here when we least expect it.  I'm not popping any corks until the official results are in, but there is a little ginger in my step that hasn't been there in some time. 

In addition to his regular upper endoscopy, Roo also underwent a bronchoscopy this time around.  In a strange twist of fate I almost forgot all about the scope results because I was sure that the budesonide wasn't working.  I was more focused on the bronchoscopy first because he'd never had one and second, because the Otolaryngologist or ear, nose, and throat specialist (yes, we've added yet another specialist to "The Team") warned us that Roo would likely need to be admitted to the hospital if he wasn't breathing well following the procedure.  The rationale was that he's already had lots of breathing issues - namely acute Croup and Stridor - following his regular scopes, and that a bronchoscopy would cause even more trauma to his airway thus increasing the croupy response.  Fortunately that didn't happen and now we think we now why.

As it turns out, Roo's airway is especially small.  He's obviously part Lilliputian to begin with and based on his actual stats of a whopping 24 pounds and 34 inches, the ENT said his airway is about 50% of the size he would expect it to be.  How this comes as a surprise I'm not sure.  I mean, his entire neck has the girth of a garden hose.  Regardless, the breathing tubes used during his previous procedures were much too large and essentially tore up his wind pipe...hence the coughing up of blood and tracheal spasms.  But seriously, is Roo the smallest 3-year-old they've ever seen in the Children's hospital?  I'm once again left wondering how this went unnoticed by the anesthesia team in a hospital devoted specifically to very sick children.

Well, enough of that because the reality is that no matter how we had to find it out, I'm thrilled that there's a reason for his bad reaction to anesthesia that doesn't involve another allergy or a tumor.  Things could be much worse.  And now they know what size tube to use.

So, just waiting for the phone to ring.  Not chiming any victory bells yet but the mallet's in my hand.

Tuesday, April 5, 2011

Praising Francesca and Chipotle

As you might imagine we rarely eat out as a family.  Far too many restaurant meals have ended in a table full of vomit to fully enjoy the experience.  Lately, however, the urge for some normalcy and let's be honest, a break from the kitchen, has been looming.  Gladly, Roo's on an upswing at the moment and seems to be tolerating food unusually well.  Time to capitalize on our good fortune, because who knows where we'll be after the next scope. 

Saturday night on a whim we headed to one of our favorite and historically most child-friendly and allergy-accommodating restaurants,  Francesca's Al Fiore, in Forest Park.  Now despite the awesome pizza, this is no pizza joint.  With white tablecloths, real napkins, great food, and a fully stocked wine cellar, it was almost like date night, plus three.  As usual the staff was exceedingly patient and understanding about our plethora of questions regarding the ingredients and the waitress event went so far as to declare that we have most charming children.  They were remarkably well behaved and quiet, almost like we do this all the time.  Ranked among our top 3 meals out as a family.  Ever.  Hands down.   

So today while Looly was on a field trip leaving the little ones and me to run errands, I was struck with a sudden surge of bravery.  Lunch out.  Just the three of us.  While I realize that grabbing a quick lunch with the kiddos is commonplace for many families, we are not one of them.  On top of the constant threat of anaphylaxis, have I mentioned that Roo vomits in restaurants?  Take it from the lady who travels with an empty tupperware container and a dish towel in my purse, just in case.

Bring on Chipotle.  Did you know that Chipotle is a completely peanut and tree nut-free establishment?  I didn't until all too recently.  No egg either.  Their allergy information is super accessible and again, the staff was well-informed and incredibly accommodating.  No grimaces or sighs as I asked my slew of questions.  The lady even asked me if I'd like her to change gloves because I had asked about dairy cross-contamination.  Fortunately, with Roo's dairy trial underway, he had plenty to choose from.  Chips, guacamole, cheese quesadilla, rice, black beans, and more shredded cheese on top.  Technically he could eat the chicken and carnitas too, but they were a little spicy for both kids.  Now if that meal can't put some weight on him, I don't know what will.  Of course, if we lose soy next week after the scope, we're totally screwed.  But today is a good day.  

This oughta sum it up...