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 19, 2011
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...
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...
Thursday, March 31, 2011
Warming Up
After more than a week without heat, we've finally ditched the layers and freed ourselves from a fixed family huddle around the gas fireplace. For several days we rarely left the confines of the five by eight foot rug directly in front of our sole heat source. We played board games, held concerts, read books, had "picnics" and did periodic jumping jacks to keep warm, while outside temperatures hovered in the low 30's. It actually wasn't all bad, especially for Looly Ingalls Wilder. She enjoyed the snuggle time and imagining just how cold that Long Winter really must have been for Laura, Mary, Carrie, and the gang. In any event, the boiler is rolling again and the kids are down to one pair of pajamas at night.
Oddly, the deep freeze seems to have agreed with Roo. He's been vomit-free for over a week and has eaten surprisingly well. Well, maybe not well in the traditional sense of the word, but not bad for him...few bites of breakfast, fine lunch, adequate dinner and a little milk for consecutive days. A good day is always good but I sort of hate when this happens because it starts to get my hopes up that he could maybe, possibly, perhaps, just the tiniest bit be improving. But, we've had these happy spells before so I'm not holding my breath for any miracles. But I am trying to enjoy the good days while they're here. With the next scope fast approaching, they won't last long. April 15. Mark your calendars.
Oddly, the deep freeze seems to have agreed with Roo. He's been vomit-free for over a week and has eaten surprisingly well. Well, maybe not well in the traditional sense of the word, but not bad for him...few bites of breakfast, fine lunch, adequate dinner and a little milk for consecutive days. A good day is always good but I sort of hate when this happens because it starts to get my hopes up that he could maybe, possibly, perhaps, just the tiniest bit be improving. But, we've had these happy spells before so I'm not holding my breath for any miracles. But I am trying to enjoy the good days while they're here. With the next scope fast approaching, they won't last long. April 15. Mark your calendars.
Friday, March 18, 2011
Happy Birthday
So, I admit it. I've been avoiding the blog. It's not that I haven't had anything to say. In fact it's rather the opposite. Anyway, I'm so exhausted my left eyelid is twitching as I look at the screen but I'm sucking it up, along with a Starbucks iced coffee, in honor of my 2 brand-spankingly new 3-year-olds.
Yes, Roo and Bean are 3! Presents at the breakfast table were a big hit. Thanks to Nana and Grampy for St. Patrick's Day head gear and embroidered t-shirts but it was downhill from there. Only a couple of kids showed up to preschool to celebrate with Bean and Roo and share in their hand-dipped chocolate-sprinkle coated pretzels. Now I think I know why.
Poor Bean developed a killer earache immediately after lunch. Then the fever showed up. Tylenol did little to ease her pain and the poor kid had absolutely no interest in her presents. It was so sad. Roo posted a lackluster performance at feeding therapy highlighted by gagging on a piece of salami without actually following through with a full-on vomit. It's the little things.
Already sleep-deprived and hungry since he didn't eat his lunch, Roo opted out of nap which resulted in general 3-year-old debauchery and me screaming at him on his birthday and putting him into a lengthy purposeless time-out. Stellar parenting, I know. I did apologize later and draw him a chalk birthday cake but the damage was done. Think he's the only one who's sleep deprived?
We capped off the evening with take-out pizza, avoided all happy birthday phone calls, and skipped dessert. No singing of happy birthday or anything. We are truly ba humbug parents but it just wasn't in the cards this year. Mufasa and I spent the vast majority of the night trying to comfort Bean. Turns out she had something to cry about. The pediatrician confirmed a double ear infection this morning and her temperature was up to 103.5. That was with tylenol. Poor birthday girl.
Just when we thought we were through the woods and the sky was showing signs of life, Looly awoke this morning with a bloody nose. Now her cheeks are turning pink like Bean's, a sure sign she's next in line for the fever. She's been complaining about headaches a lot lately and I don't know what to think.
Phew. With that off my chest, let's talk about fun stuff. Bean and Roo received so many sweet well-wishes from friends, family, and classmates yesterday. My favorite was listening to the two of them congratulating each other on another year. They really are best friends. Ear infections pass but the loving support system they have in place is remarkable. They got some really cool gifts including an awesome Cozy Coupe car that Mufasa grumbled and slaved over, I mean happily assembled, for Bean, a slick royal blue real guitar for Roo, Magna-tiles (my personal favorite!), hand-painted bowls with their names on them, whiffle balls and bats, umbrellas, various adorable new duds, books, etc. Roo was thrilled with his gifts and Bean will be too once she's feeling better.
Last but not least, Roo's scope is finally scheduled for April 15 - hallelujah! More on that another time. And did I mention is was 65 degrees and sunny yesterday? The big birthday party with their classmates is slated for this Sunday. Let's hope the amoxicillin works it's magic fast.
Yes, Roo and Bean are 3! Presents at the breakfast table were a big hit. Thanks to Nana and Grampy for St. Patrick's Day head gear and embroidered t-shirts but it was downhill from there. Only a couple of kids showed up to preschool to celebrate with Bean and Roo and share in their hand-dipped chocolate-sprinkle coated pretzels. Now I think I know why.
Poor Bean developed a killer earache immediately after lunch. Then the fever showed up. Tylenol did little to ease her pain and the poor kid had absolutely no interest in her presents. It was so sad. Roo posted a lackluster performance at feeding therapy highlighted by gagging on a piece of salami without actually following through with a full-on vomit. It's the little things.
Already sleep-deprived and hungry since he didn't eat his lunch, Roo opted out of nap which resulted in general 3-year-old debauchery and me screaming at him on his birthday and putting him into a lengthy purposeless time-out. Stellar parenting, I know. I did apologize later and draw him a chalk birthday cake but the damage was done. Think he's the only one who's sleep deprived?
We capped off the evening with take-out pizza, avoided all happy birthday phone calls, and skipped dessert. No singing of happy birthday or anything. We are truly ba humbug parents but it just wasn't in the cards this year. Mufasa and I spent the vast majority of the night trying to comfort Bean. Turns out she had something to cry about. The pediatrician confirmed a double ear infection this morning and her temperature was up to 103.5. That was with tylenol. Poor birthday girl.
Just when we thought we were through the woods and the sky was showing signs of life, Looly awoke this morning with a bloody nose. Now her cheeks are turning pink like Bean's, a sure sign she's next in line for the fever. She's been complaining about headaches a lot lately and I don't know what to think.
Phew. With that off my chest, let's talk about fun stuff. Bean and Roo received so many sweet well-wishes from friends, family, and classmates yesterday. My favorite was listening to the two of them congratulating each other on another year. They really are best friends. Ear infections pass but the loving support system they have in place is remarkable. They got some really cool gifts including an awesome Cozy Coupe car that Mufasa grumbled and slaved over, I mean happily assembled, for Bean, a slick royal blue real guitar for Roo, Magna-tiles (my personal favorite!), hand-painted bowls with their names on them, whiffle balls and bats, umbrellas, various adorable new duds, books, etc. Roo was thrilled with his gifts and Bean will be too once she's feeling better.
Last but not least, Roo's scope is finally scheduled for April 15 - hallelujah! More on that another time. And did I mention is was 65 degrees and sunny yesterday? The big birthday party with their classmates is slated for this Sunday. Let's hope the amoxicillin works it's magic fast.
Thursday, February 17, 2011
Our Lady of Perpetual Vomit
I have a wild fantasy that one day I will sit down to a family meal without fear that my child will start puking at any minute. I won't cringe every time he jumps off the couch or rough houses with his sisters because there's a chance he'll get hurt, cry, and puke. Maybe there will come a day when I'll prepare spaghetti sauce without the slightest apprehension that a tiny slip of onion might have migrated into the sauce only to end up in the final bite of Roo's plate thus obliterating what was just a moment ago, a nutrient-dense, high-calorie meal. The baby scale will become a relic of the past. As will the baby bottles, 1 AM feedings, 4 AM feedings, constant meal-time television, songs, and other distractions we employ to sneak in a few more bites before he can realize what's happening.
Needles to say, it's a far off land I'm dreaming of. We're almost 3 weeks into the Budesonide and there's no change, at least on the vomit front. If anything, he's vomiting more that he was a month ago. Gagging triggers it. Unfamiliar textures and flavors trigger it. Being full triggers it. TMI, perhaps, but straining with bowel movements can trigger it. Today a yogurt-induced stomachache triggered it. Sometimes nothing at all triggers it and he goes on playing like it never even happened. But most of all, crying triggers it - and when you have a 2-year-old (on steroids, I might add) that you're afraid to let cry, it leads to some interesting behavioral scenarios.
We still don't know for sure if the Budesonide is having an effect but the signs are less than encouraging. On one hand, he seems a tad happier especially upon waking from naps and first thing in the morning. He used to be inconsolable at those times and now, he's generally chipper. Beyond that, however, no increased appetite. No improvement in the oral delay. No decrease in vomiting. No weight gain.
Needles to say, it's a far off land I'm dreaming of. We're almost 3 weeks into the Budesonide and there's no change, at least on the vomit front. If anything, he's vomiting more that he was a month ago. Gagging triggers it. Unfamiliar textures and flavors trigger it. Being full triggers it. TMI, perhaps, but straining with bowel movements can trigger it. Today a yogurt-induced stomachache triggered it. Sometimes nothing at all triggers it and he goes on playing like it never even happened. But most of all, crying triggers it - and when you have a 2-year-old (on steroids, I might add) that you're afraid to let cry, it leads to some interesting behavioral scenarios.
We still don't know for sure if the Budesonide is having an effect but the signs are less than encouraging. On one hand, he seems a tad happier especially upon waking from naps and first thing in the morning. He used to be inconsolable at those times and now, he's generally chipper. Beyond that, however, no increased appetite. No improvement in the oral delay. No decrease in vomiting. No weight gain.
Friday, February 11, 2011
Cheese!
Giordano's pizza party Wednesday, veggie-feta pasta topped with Parmesan last night, good Wisconsin cheddar, lactic acid starter culture-laced salami, real buttered toast, and plans for Valentine's Day ice cream sundaes. I don't know about the kids but I'll be kicking and screaming if and when we're forced to return to our dairy-free ways. So much fun. I might make macaroni and cheese for lunch and I don't even like macaroni and cheese.
Thursday, February 10, 2011
Growth Charts and Milkshakes
We had our big appointment yesterday with our GI team including our CNP, GI doctor, nutritionist, and various researchers and residents. Overall, the meeting went better than expected. Aside from parking garage chaos and Roo's buffoonery which included repeated diving off the examination table, pilfering and eating 3 Dum Dum lollipops from my purse - mostly in front of the nutritionist, and running head first into a porcelain sink that happened to be at his eye level, things went OK.
We're now about 10 days into our Budesonide trial. I still can't tell if it's working to clear the EoE, but we're cautiously optimistic. The team gave us an approximate 80 percent chance that the meds will work to clear him up, however temporarily, and said it could take a few weeks before we start seeing results. I would be a lot more comfortable with 99.9 percent odds in our favor, but I suppose it could be a lot worse than 80.
Exciting for us, though not as much for our CNP, was that Roo tipped the scales at 11.1 kg. That's 24.4 pounds! Yes, he was fully clothed, but his shoes were off, so how much can a pair of sweatpants and a long-sleeved t-shirt really weigh? The CNP was discouraged because he was "down a little bit" (maybe a few ounces - but they weighted him WITH his shoes!) from his last weigh-in at the January scope. But, as Mufasa and I studied his growth chart in detail, we were happy to point out to her that he is up almost 2 pounds since early November. In fact, that gap between him and the bottom of the growth chart has closed up quite a bit. He's still not exactly on the chart, but he's more of a finger width away now, rather than an entire finger length as was once the case.
We talked about what if the meds don't work, what if they do, NG-tubes (nasogastric - the kind through the nose) versus gastronomy tubes (g-tube - the kinds directly into the stomach). We talked about his behavior issues and steroids are likely to blame, at least to some extent. And we have decided to reintroduce dairy to his diet.
According to GI, if the Budesonide is working, he should be able to eat any of the foods that are causing his EoE. We've opted not to go so far as to put beef, peaches, or apples back into his rotation since he has had at least once positive allergy test to those foods. Eggs and all nuts are still strictly off limits because they are IgE mediated allergies for him (he reacts immediately). Dairy, however, has always been questionable. The prospect of opening up his diet to include dairy is a beautiful beautiful thing. The fat, the calories, the variety, the possibilities!! On the other hand, we might be doing more psychological damage here as we allow the kid to indulge in macaroni and cheese, pizza, milkshakes, and full fat cheddar cheese only to take them all away again in a couple of months if the Budesonide course is unsuccessful. So, where there's an up, there's always a down. Seven weeks to the next scope.
We're now about 10 days into our Budesonide trial. I still can't tell if it's working to clear the EoE, but we're cautiously optimistic. The team gave us an approximate 80 percent chance that the meds will work to clear him up, however temporarily, and said it could take a few weeks before we start seeing results. I would be a lot more comfortable with 99.9 percent odds in our favor, but I suppose it could be a lot worse than 80.
Exciting for us, though not as much for our CNP, was that Roo tipped the scales at 11.1 kg. That's 24.4 pounds! Yes, he was fully clothed, but his shoes were off, so how much can a pair of sweatpants and a long-sleeved t-shirt really weigh? The CNP was discouraged because he was "down a little bit" (maybe a few ounces - but they weighted him WITH his shoes!) from his last weigh-in at the January scope. But, as Mufasa and I studied his growth chart in detail, we were happy to point out to her that he is up almost 2 pounds since early November. In fact, that gap between him and the bottom of the growth chart has closed up quite a bit. He's still not exactly on the chart, but he's more of a finger width away now, rather than an entire finger length as was once the case.
We talked about what if the meds don't work, what if they do, NG-tubes (nasogastric - the kind through the nose) versus gastronomy tubes (g-tube - the kinds directly into the stomach). We talked about his behavior issues and steroids are likely to blame, at least to some extent. And we have decided to reintroduce dairy to his diet.
According to GI, if the Budesonide is working, he should be able to eat any of the foods that are causing his EoE. We've opted not to go so far as to put beef, peaches, or apples back into his rotation since he has had at least once positive allergy test to those foods. Eggs and all nuts are still strictly off limits because they are IgE mediated allergies for him (he reacts immediately). Dairy, however, has always been questionable. The prospect of opening up his diet to include dairy is a beautiful beautiful thing. The fat, the calories, the variety, the possibilities!! On the other hand, we might be doing more psychological damage here as we allow the kid to indulge in macaroni and cheese, pizza, milkshakes, and full fat cheddar cheese only to take them all away again in a couple of months if the Budesonide course is unsuccessful. So, where there's an up, there's always a down. Seven weeks to the next scope.
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