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.
Showing posts with label upper endoscopy. Show all posts
Showing posts with label upper endoscopy. Show all posts
Tuesday, April 19, 2011
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.
Wednesday, January 26, 2011
Law of Attraction
We're still waiting on the biopsy results from the last upper endoscopy but as I mentioned, the scoping doctor already crushed any lingering hope we might have had that Roo's improved. So, I've been sitting here stewing for the past week trying to wrap my head around the idea that this EoE crap isn't something he's going to simply outgrow. The allergies continue to increase with no signs of outgrowing anything. I'm preparing myself for the placement of a g-tube. I've joined a couple of online support groups for families dealing with eosinophilic disorders. I'm thinking about how the rest of us will continue to take meals when Roo is the pariah with the tube. I've put all our air travel plans on hold until the little kids are in college.
Before this latest scope, Roo was doing better. Really better. He was eating enthusiastically, trying new foods, gaining weight for crying out loud. He was happy, enjoying school, running around like the crazy 2-year-old he's supposed to be. Then, all it takes is one scope where some doctor we've never seen before in our lives tells us that he has made absolutely no improvement and we are worse off than when we started. Now Roo's suddenly acting uncomfortable and grasping his throat when he eats. He's vomiting again. He still has the remnants of the croupy cough he developed from the breathing tube. He's waking up several times at night. We've increased his allergy suspect list to include:
tomatoes
corn
fructose
food dyes
cinnamon
yeast
lentils
peas
lamb
soy
wheat
(in addition to dairy, egg, peanuts, tree nuts, apple, peach, and beef of course)
I'm spending countless hours re-imagining our lives as a family - no unnecessary travel, few - if any restaurant meals, limited play dates, private school (home school?) since I can't trust the public school (or maybe ANY school) to provide a safe eating environment for him let alone prepare food he can actually eat. And it sucks. We sit and wallow and wait for the next shoe to drop because while I thought we'd lost our best pair months ago, it looks like we're dealing with a centipede.
The more we sit at the hospital doing tests, the more research I do, the more EoE families I talk to, the worse Roo's symptoms seem to become. This cannot all be in my head. Every time he takes a small step forward someone comes out of the woodwork to take it away and push him back down and I'm so tired of it. I know it's a long road but we've been at this for over 18 months now. He has earned the right to some forward progress.
Yes, it may be a bit flaky even for me but I'm totally buying into the Law of Attraction here. If you're unfamiliar, the Law of Attraction is this metaphysical, unsubstantiated, Oprah-endorsed theory that basically rests on the belief that like attracts like. If you have positive, happy, healthy thoughts then positive, happy, healthy things will come to you. On the contrary, when you sit in the doctor's office attached to a bunch of tubes and wires being told how unbelievably sick you are day after day, you're likely to feel sicker.
Our biopsy phone call should come today or tomorrow.
Before this latest scope, Roo was doing better. Really better. He was eating enthusiastically, trying new foods, gaining weight for crying out loud. He was happy, enjoying school, running around like the crazy 2-year-old he's supposed to be. Then, all it takes is one scope where some doctor we've never seen before in our lives tells us that he has made absolutely no improvement and we are worse off than when we started. Now Roo's suddenly acting uncomfortable and grasping his throat when he eats. He's vomiting again. He still has the remnants of the croupy cough he developed from the breathing tube. He's waking up several times at night. We've increased his allergy suspect list to include:
tomatoes
corn
fructose
food dyes
cinnamon
yeast
lentils
peas
lamb
soy
wheat
(in addition to dairy, egg, peanuts, tree nuts, apple, peach, and beef of course)
I'm spending countless hours re-imagining our lives as a family - no unnecessary travel, few - if any restaurant meals, limited play dates, private school (home school?) since I can't trust the public school (or maybe ANY school) to provide a safe eating environment for him let alone prepare food he can actually eat. And it sucks. We sit and wallow and wait for the next shoe to drop because while I thought we'd lost our best pair months ago, it looks like we're dealing with a centipede.
The more we sit at the hospital doing tests, the more research I do, the more EoE families I talk to, the worse Roo's symptoms seem to become. This cannot all be in my head. Every time he takes a small step forward someone comes out of the woodwork to take it away and push him back down and I'm so tired of it. I know it's a long road but we've been at this for over 18 months now. He has earned the right to some forward progress.
Yes, it may be a bit flaky even for me but I'm totally buying into the Law of Attraction here. If you're unfamiliar, the Law of Attraction is this metaphysical, unsubstantiated, Oprah-endorsed theory that basically rests on the belief that like attracts like. If you have positive, happy, healthy thoughts then positive, happy, healthy things will come to you. On the contrary, when you sit in the doctor's office attached to a bunch of tubes and wires being told how unbelievably sick you are day after day, you're likely to feel sicker.
Our biopsy phone call should come today or tomorrow.
Wednesday, January 19, 2011
Scope 5
Once again things didn't go according to plan. I don't know why I keep setting expectations for these things anyway. The EoE is still there. There were clear visible signs in the photos and Super EoE Doc informed us he's very well versed in judging the photos and well, the EoE's still there and active. Of course the official biopsy results will be back some time next week but it doesn't really matter.
The polyp is still there but on a bright note, today's physician claimed it is not a polyp but rather a "bump", which is great since now there are more of them. He claims they are associated with EoE and are further evidence that the allergy cells are still alive and thriving. He took a sample of the biggest bump just to be sure.
To add to the excitement, Roo is once again experiencing croup following the breathing tube and anesthesia. He seems to have a reactive airway which means we got to spend a couple of extra hours in recovery while he coughed up blood, received nebulizer treatments, and got some steroids via IV. We're keeping our fingers crossed that it helps prevent another ER visit tonight.
We're crushed. Had big hopes for this one. He's off everything he was off when he got a clean scope over a year ago so we're back to square one. We're still a step away from tube feedings but this is a dangerous path we're on. I fear we're just really getting started.
The polyp is still there but on a bright note, today's physician claimed it is not a polyp but rather a "bump", which is great since now there are more of them. He claims they are associated with EoE and are further evidence that the allergy cells are still alive and thriving. He took a sample of the biggest bump just to be sure.
To add to the excitement, Roo is once again experiencing croup following the breathing tube and anesthesia. He seems to have a reactive airway which means we got to spend a couple of extra hours in recovery while he coughed up blood, received nebulizer treatments, and got some steroids via IV. We're keeping our fingers crossed that it helps prevent another ER visit tonight.
We're crushed. Had big hopes for this one. He's off everything he was off when he got a clean scope over a year ago so we're back to square one. We're still a step away from tube feedings but this is a dangerous path we're on. I fear we're just really getting started.
Tuesday, January 18, 2011
Big Day
Barring any unforeseen, or, since big sister is infected with some sort of hack-inducing bug, foreseen complications, Roo's long awaited 5th scope is tomorrow morning at 7 am sharp. So, in order of preference, my wish list goes something like this:
1. No more polyp or other strange masses
2. Assuming wish #1 doesn't work out, polyp biopsy comes back negative for anything truly nasty (assuming they remember to take one this time grr....!)
3. EoE scope is clean (i.e. no allergy cells in the esophagus)
4. No emergency room visit tomorrow night
5. Massive rapid weight gain over next several months
6. Successful reintroduction of dairy in 6 months or so followed by...
7. Outgrowing of additional current allergies and no new ones ever
They reminded me that I have to bring him his own juice to drink in recovery since the standard offering is apple juice. Even on The Island of Misfit Toys we're misfits.
1. No more polyp or other strange masses
2. Assuming wish #1 doesn't work out, polyp biopsy comes back negative for anything truly nasty (assuming they remember to take one this time grr....!)
3. EoE scope is clean (i.e. no allergy cells in the esophagus)
4. No emergency room visit tomorrow night
5. Massive rapid weight gain over next several months
6. Successful reintroduction of dairy in 6 months or so followed by...
7. Outgrowing of additional current allergies and no new ones ever
They reminded me that I have to bring him his own juice to drink in recovery since the standard offering is apple juice. Even on The Island of Misfit Toys we're misfits.
Wednesday, January 12, 2011
Vague Intentions
Happy New Year!
Typically I'm a resolutions girl. I love a good, measurable, finite challenge. Resolutions past include:
So a slacker's list it is. My vague intentions for 2011 are not revolutionary by any means but they all lean toward achieving some semblance of personal balance that's been lacking since, well, I suppose since I got pregnant with twins in 2007. Write more. Sweat more. Eat more good stuff and less bad stuff. Spend less. Play more. Worry less.
Roo threw up carrots at school yesterday. Next scope is 1/19. Baby steps on that worry part.
Typically I'm a resolutions girl. I love a good, measurable, finite challenge. Resolutions past include:
- Lose 25 pounds
- Run the Chicago marathon
- Try a new recipe every week
- Learn to play tennis
- Take more writing classes
- Become licensed massage therapist
- Start a blog
- Publish something...anything
So a slacker's list it is. My vague intentions for 2011 are not revolutionary by any means but they all lean toward achieving some semblance of personal balance that's been lacking since, well, I suppose since I got pregnant with twins in 2007. Write more. Sweat more. Eat more good stuff and less bad stuff. Spend less. Play more. Worry less.
Roo threw up carrots at school yesterday. Next scope is 1/19. Baby steps on that worry part.
Tuesday, December 21, 2010
Bumped
They just pushed Roo's scope out 2 weeks to January 19. Seems Dr. XYZ who will be performing the scope has a meeting he cannot miss on Jan 6. Our next option is the 19th. Because what's another two weeks when there might be a mass growing in your child's esophagus? Merry Christmas.
The search for a new team starts now. Anyone have any opinions about Comer Children's Hospital (U of Chicago)?
The search for a new team starts now. Anyone have any opinions about Comer Children's Hospital (U of Chicago)?
Tuesday, December 14, 2010
Results? What results?
For those of you anxiously awaiting results from Roo's big polyp biopsy last month, you might want to get comfortable. In a sudden 180, the hospital now claims that no polyp biopsy was ever taken. I beg to differ seeing as...
1. I spoke directly with the doctor who performed the scope immediately following the procedure. He showed me pictures of the polyp and assured me that he took biopsies from the polyp itself, as well as the surrounding tissue. Results would be back in about a week.
2. After calling to follow up for over a week with no results, our case managing nurse practitioner contacted the scoping doctor to be sure that he had in fact taken biopsies. She reported back to me that he did, they were just taking a while in pathology.
3. Most convincing to me is that who in their right mind, while in the midst of scoping and taking biopsies from a sedated toddler's esophagus, upon discovering a foreign mass would choose NOT to take a sample of it?! Wait for another day? Another round of general anesthesia?
Well, anyway, that's the story I'm getting. With back paddles splashing faster than a rafting team heading for a waterfall, our GI team claims that a miscommunication led to my erroneous assumption that a polyp biopsy was ever taken. In addition, pediatric esophageal polyps are nearly always benign and it's no big deal because we'll take another look at his next scope. And this time the one doctor who really knows about EoE will do the scope - you know, the one we wanted to see but couldn't get an appointment with because he gets really really booked up with the patients who opted into his research study on EoE? Really? Mind if I take a knife to your kid's throat repeatedly? If I don't get what we're looking for, don't worry about it. I'll call in someone who does. It will probably be fine.
I've had a couple of weeks to let this sink in now and the initial fury has dissipated to a more general seethe. Basically we can't change anything at this point. There's not exactly an abundance of brilliant, well-funded, pediatric EoE teams even in our booming metropolis. I'm beginning to take a hard look, however, at what that brilliant team from the well-funded hospital is getting us. Maybe small, independent, and kind of smart is more our speed.
1. I spoke directly with the doctor who performed the scope immediately following the procedure. He showed me pictures of the polyp and assured me that he took biopsies from the polyp itself, as well as the surrounding tissue. Results would be back in about a week.
2. After calling to follow up for over a week with no results, our case managing nurse practitioner contacted the scoping doctor to be sure that he had in fact taken biopsies. She reported back to me that he did, they were just taking a while in pathology.
3. Most convincing to me is that who in their right mind, while in the midst of scoping and taking biopsies from a sedated toddler's esophagus, upon discovering a foreign mass would choose NOT to take a sample of it?! Wait for another day? Another round of general anesthesia?
Well, anyway, that's the story I'm getting. With back paddles splashing faster than a rafting team heading for a waterfall, our GI team claims that a miscommunication led to my erroneous assumption that a polyp biopsy was ever taken. In addition, pediatric esophageal polyps are nearly always benign and it's no big deal because we'll take another look at his next scope. And this time the one doctor who really knows about EoE will do the scope - you know, the one we wanted to see but couldn't get an appointment with because he gets really really booked up with the patients who opted into his research study on EoE? Really? Mind if I take a knife to your kid's throat repeatedly? If I don't get what we're looking for, don't worry about it. I'll call in someone who does. It will probably be fine.
I've had a couple of weeks to let this sink in now and the initial fury has dissipated to a more general seethe. Basically we can't change anything at this point. There's not exactly an abundance of brilliant, well-funded, pediatric EoE teams even in our booming metropolis. I'm beginning to take a hard look, however, at what that brilliant team from the well-funded hospital is getting us. Maybe small, independent, and kind of smart is more our speed.
Wednesday, November 10, 2010
My latest beef...
Roo's latest EoE scope results are in and it appears that "good" news we've been hoping for will have to wait for another week. The eosinophils are still in full force. Actually, they've reduced ever so subtly in the mid-esophagus but are thick as ever in the distal esophagus. So, essentially we took dairy out of his diet (again) for seven weeks, sedated the kids, stuck a camera down his throat and now we know....absolutely nothing more than we did seven weeks ago.
Maybe milk isn't the culprit after all? Or it's not the only one? Maybe there's a new allergy? Or allergies? We have no idea. We're no closer to an answer but it does help explain why Roo continues to vomit regularly. There's still the lingering possibility of beef, but everyone I mention it to starts talking to me like I'm pushing a shopping cart down the highway wearing a bird carcass on my head.
I am getting a thorough education in the ways my own body manifests stress...pimples, inexplicable exhaustion, my own GI trouble of which I'll save the gory details, living in gym clothes without venturing anywhere near the gym, constant overwhelming urge to drink milkshakes, and infrequent showering have all become par for the course because when you look good, you feel good.
The polyp biopsies have been sent to a different lab for pathology. We wont have them until Monday. Until then all I really want to do is drink wine, eat chocolate, and sob quietly whenever the mood strikes. Should be another stellar weekend.
Maybe milk isn't the culprit after all? Or it's not the only one? Maybe there's a new allergy? Or allergies? We have no idea. We're no closer to an answer but it does help explain why Roo continues to vomit regularly. There's still the lingering possibility of beef, but everyone I mention it to starts talking to me like I'm pushing a shopping cart down the highway wearing a bird carcass on my head.
I am getting a thorough education in the ways my own body manifests stress...pimples, inexplicable exhaustion, my own GI trouble of which I'll save the gory details, living in gym clothes without venturing anywhere near the gym, constant overwhelming urge to drink milkshakes, and infrequent showering have all become par for the course because when you look good, you feel good.
The polyp biopsies have been sent to a different lab for pathology. We wont have them until Monday. Until then all I really want to do is drink wine, eat chocolate, and sob quietly whenever the mood strikes. Should be another stellar weekend.
Saturday, November 6, 2010
Same day. Different hospital.
Sooooo...let's just say things didn't go exactly according to plan yesterday. We started out well enough with Roo and I both surprisingly chipper to be up well before dawn. He was a regular bundle of cotton candy and kisses, spotting city buses with a commuter's precision, singing endless verses of The Wheels on the Bus, practically bursting the seems of his blue stripey pj's and woolen winter hat with incomparable cuteness. It wasn't until we neared the hospital 30 minutes away that he started to wane.
"I want my Kaloo."
Oh crap. Kaloo. Imagine my horror at realizing mere moments from IV insertion, that I had forgotten Roo's beloved Kaloo bunny at home. I mean, we don't go to the grocery store without Kaloo. Surgery? Are you kidding?
Somehow we made it through the procedure but it wasn't pretty. He had a rougher time coming around from the anesthesia than I've grown accustomed to, and the fact that he was hacking like a seal and spewing bloody saliva afterward didn't help matters. That hadn't happened before.
The immediate results from the scope were mediocre at best.
Good news: the GI doc performing the scope did not see evidence of furrowing or white plaques that were spotted last time.
Bad news: There's a polyp in Roo's esophagus and he has no idea what it is.
Obviously we won't know anything definitive until the biopsies are back late next week. Until then, we wait.
Having conquered the beast that is toddler surgery, Mufasa and I were all too happy to turn into bed early to face the polyp issue with clear heads in the morning. Our sweet dreams were soured, salted, and stewed at 2:30 am when Roo awoke barking, sobbing, vomiting, and gasping for air. I've experienced the Stridor of Croup a few times in this motherhood stint but this was different. The kid couldn't catch his breath, his stomach was sucking in so far in with every breath I swear I was seeing his spine. He was throwing up and choking. Then his lips started getting a little blue. Off to the ER.
Two breathing treatments, a second IV in 24 hours, plenty of steroids, more vomiting, 2 rectal temps, and 4 and a half hours later we came home. He's bruised, coughing, exhausted, and covered in medical tape he won't let us peel off, but as usual, still smiling. So hoping tonight is less eventful.
"I want my Kaloo."
Oh crap. Kaloo. Imagine my horror at realizing mere moments from IV insertion, that I had forgotten Roo's beloved Kaloo bunny at home. I mean, we don't go to the grocery store without Kaloo. Surgery? Are you kidding?
Somehow we made it through the procedure but it wasn't pretty. He had a rougher time coming around from the anesthesia than I've grown accustomed to, and the fact that he was hacking like a seal and spewing bloody saliva afterward didn't help matters. That hadn't happened before.
The immediate results from the scope were mediocre at best.
Good news: the GI doc performing the scope did not see evidence of furrowing or white plaques that were spotted last time.
Bad news: There's a polyp in Roo's esophagus and he has no idea what it is.
Obviously we won't know anything definitive until the biopsies are back late next week. Until then, we wait.
Having conquered the beast that is toddler surgery, Mufasa and I were all too happy to turn into bed early to face the polyp issue with clear heads in the morning. Our sweet dreams were soured, salted, and stewed at 2:30 am when Roo awoke barking, sobbing, vomiting, and gasping for air. I've experienced the Stridor of Croup a few times in this motherhood stint but this was different. The kid couldn't catch his breath, his stomach was sucking in so far in with every breath I swear I was seeing his spine. He was throwing up and choking. Then his lips started getting a little blue. Off to the ER.
Two breathing treatments, a second IV in 24 hours, plenty of steroids, more vomiting, 2 rectal temps, and 4 and a half hours later we came home. He's bruised, coughing, exhausted, and covered in medical tape he won't let us peel off, but as usual, still smiling. So hoping tonight is less eventful.
Wednesday, October 27, 2010
November Social Calendar
Roo had the pleasure of a 3 hour appointment with his new allergist this week. She seems qualified and knowledgeable, she pricked his back 32 times and injected various poisons looking for hives...the usual. We didn't test for nuts to avoid another exposure but he's still very positive for eggs - both yolks and whites but no new culprits appeared on the prick test, so that's positive. That and he didn't throw up even while the nurse and I pinned him to the table, pricked his back and forced him to lay face down in a puddle of his own snot for 20 minutes. On the other hand, now she has me freaked out that he probably has asthma too.
Still to come this month...
- Pre-op physical with the pediatrician
- Surgury (5th Upper Endoscopy to date to check for eosinophils since re-eliminating milk)
- Blood draw for RAST for peanuts and tree nuts
- Allergist (patch test application)
- Allergist (patch test removal)
- Allergist (patch test evaluation - all separate appointments, of course)
- Flu-shot testing
- And eventually, we hope, one flu shot, rather than the series of 4, but remains to be seen.
Can barely wait to see what's on tap for December!
Still to come this month...
- Pre-op physical with the pediatrician
- Surgury (5th Upper Endoscopy to date to check for eosinophils since re-eliminating milk)
- Blood draw for RAST for peanuts and tree nuts
- Allergist (patch test application)
- Allergist (patch test removal)
- Allergist (patch test evaluation - all separate appointments, of course)
- Flu-shot testing
- And eventually, we hope, one flu shot, rather than the series of 4, but remains to be seen.
Can barely wait to see what's on tap for December!
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