Fortune telling shirt?Thursday, April 29, 2010
Wednesday, April 28, 2010
Buy stock in Abbot Labs
This weekend I was on call. I was in the hospital most of both days and a lot of one of the nights.
That left Dave and Nate alone in the bachelor pad. It gave Dave lots of time to implement his evil plan. His plan to get Nathan to drink some Chocolate Neocate.
Dave I both thought it tasted better (though not a lot better) than the EO28 that we tried first.
Nathan disagreed and spent the last 2 days of the weeks spitting it, drooling it, and cheerfully bidding it "bye bye".
Then the weekend came and Dave sent him to Neocate boot camp.
No fluids were offered except the chocolate amino acid beverage.
Nathan did not drink.
We added chocolate syrup, vanilla extract, warmed it up and poured it over ice. We tried different cups. We tried a shot glass (his favorite drinking utensil).
He stood firm.
When he hadn't urinated in almost 10 hours, was awake in the middle of the night screaming for a drink, and still wouldn't swallow the Neocate, I caved and gave him a giant glass of ice cold mango juice.
Which he guzzled.
And regained his strength for the next day's battle.
In total, over about 4 days, he drank about 2 ounces of Neocate.
We gave up and Monday he drank rice milk. (NOT an infant formula. Consult physician before using in children under the age of 5!)
Tuesday the GI nutritionist finally called back and gave me some new Neocate strategies and redoubled our conviction that he needs a milk substitute that actually contains protein and fat. He's got a lot of ground to make up and solid food just isn't going to do it.
So, with a sigh and a sense of foreboding I went down to the GI clinic and picked up more EO28, more chocolate Neocate, and some Neocate tropical.
Then, as I was about to leave, it caught my eye.
Elecare.
It was in a sexy little package with a FREE plastic shaker bottle and it claimed to be vanilla flavored. Also made by the makers of Pediasure. Seemed to be in its favor.
I had read online that some kids took the Vanilla Elecare better than Neocate. I also read that many refused it. Still, I grabbed the box and added it to my stash.
When I got home Dave and I inspected the packaging like a Torah scroll, impressed by the results of a taste test done in normal children.
We weighed the powder, added water, shook it up, and Voila! magic happened.
Dave and I tasted it and agreed that we would actually drink it. Maybe a little chalky but no sulfur to be found. Strong vanilla smell and flavor. No medicinal aftertaste. We dissected it like a pair of sommeliers discussing a fine Syrah.
And then we gave it to Nathan.
Who loved it.
Who has already drank about 10 ounces of the stuff.
Who maybe, we say with fingers and toes crossed, will actually grow.
That left Dave and Nate alone in the bachelor pad. It gave Dave lots of time to implement his evil plan. His plan to get Nathan to drink some Chocolate Neocate.
Dave I both thought it tasted better (though not a lot better) than the EO28 that we tried first.
Nathan disagreed and spent the last 2 days of the weeks spitting it, drooling it, and cheerfully bidding it "bye bye".
Then the weekend came and Dave sent him to Neocate boot camp.
No fluids were offered except the chocolate amino acid beverage.
Nathan did not drink.
We added chocolate syrup, vanilla extract, warmed it up and poured it over ice. We tried different cups. We tried a shot glass (his favorite drinking utensil).
He stood firm.
When he hadn't urinated in almost 10 hours, was awake in the middle of the night screaming for a drink, and still wouldn't swallow the Neocate, I caved and gave him a giant glass of ice cold mango juice.
Which he guzzled.
And regained his strength for the next day's battle.
In total, over about 4 days, he drank about 2 ounces of Neocate.
We gave up and Monday he drank rice milk. (NOT an infant formula. Consult physician before using in children under the age of 5!)
Tuesday the GI nutritionist finally called back and gave me some new Neocate strategies and redoubled our conviction that he needs a milk substitute that actually contains protein and fat. He's got a lot of ground to make up and solid food just isn't going to do it.
So, with a sigh and a sense of foreboding I went down to the GI clinic and picked up more EO28, more chocolate Neocate, and some Neocate tropical.
Then, as I was about to leave, it caught my eye.
Elecare.
It was in a sexy little package with a FREE plastic shaker bottle and it claimed to be vanilla flavored. Also made by the makers of Pediasure. Seemed to be in its favor.
I had read online that some kids took the Vanilla Elecare better than Neocate. I also read that many refused it. Still, I grabbed the box and added it to my stash.
When I got home Dave and I inspected the packaging like a Torah scroll, impressed by the results of a taste test done in normal children.
We weighed the powder, added water, shook it up, and Voila! magic happened.
Dave and I tasted it and agreed that we would actually drink it. Maybe a little chalky but no sulfur to be found. Strong vanilla smell and flavor. No medicinal aftertaste. We dissected it like a pair of sommeliers discussing a fine Syrah.
And then we gave it to Nathan.
Who loved it.
Who has already drank about 10 ounces of the stuff.
Who maybe, we say with fingers and toes crossed, will actually grow.
Friday, April 23, 2010
Tribute
We met on an evening in September. When I got to the ER his mom had been crying. Someone had already told her that her 2 year old baby boy had a belly full of tumor.
He had big blue eyes, long eyelashes, and soft blond hair.
He also had persistent fevers, weight loss, and a listless expression
He had his mommy's hope and his daddy's heart in his hands.
This sweet little boy became many things to me.
The first (and God willing) only patient I gave the wrong diagnosis to.
When I corrected that mistake, I stood in front of his parents and told them that their child had only a 50% chance of being alive in 2 years. Another first.
The first time I a family the therapy wasn't working.
And the second.
And the third.
He never went anywhere without his pint sized hockey stick.
He usually traveled riding on the wheels of an IV pole.
He was a merciless and fairly eccentric fashion critic.
An exuberant hugger.
A fan of "The Price is Right"
A lover of "dip" (ketchup), "hot dip" (wing sauce), and Shamrock shakes.
He had wretched luck. Terrible toxicities from every single drug, slow recovery times, blood clots, infections, and ultimately, he was the first of my patients to fail to respond to every treatment we offered.
When it became clear that everything we were doing was making him miserable and nothing we were doing was stopping the tumor from multiplying in belly, lungs, and bone marrow, his parents decided to take him home and treasure having him and his sister together for as long as they could.
He died recently, a few months shy of his third birthday and just 7 months after he came into my life.
When I think about him, I can't help but remember the way those tumor cells looked under the microscope. Large and angry, clumping together and pushing the normal cells aside. Bullies imposing chaos and pain and heartache on the innocent. You could see them in the act of replicating. Always fresh troops to make him thinner, weaker, and to make his parents eyes more empty and haunted.
Mostly, however, I think about how fine and soft his hair was when it started to grow back after the chemo. I remember hallway hockey games and the times he would let me carry him around, dragging his IV pole behind us. I remember how cozy he looked curled up in bed with his bear of a father and how his Elmo slippers were almost as big as he was. I think about his smile and how he glowed when the music therapist came in with her xylophone. You could always tell what room he was in by tracking his mother's laugh but he was generally out of his room putting smiles on the faces of nurses and patients alike. He was a kid and he didn't like to let being sick get in the way of his play time.
I miss him. I am lucky to have met him. I wish I could have done more.
I am glad that there is no more suffering.
Neuroblastoma is a terrible disease and I hope someday we have a cure.
He had big blue eyes, long eyelashes, and soft blond hair.
He also had persistent fevers, weight loss, and a listless expression
He had his mommy's hope and his daddy's heart in his hands.
This sweet little boy became many things to me.
The first (and God willing) only patient I gave the wrong diagnosis to.
When I corrected that mistake, I stood in front of his parents and told them that their child had only a 50% chance of being alive in 2 years. Another first.
The first time I a family the therapy wasn't working.
And the second.
And the third.
He never went anywhere without his pint sized hockey stick.
He usually traveled riding on the wheels of an IV pole.
He was a merciless and fairly eccentric fashion critic.
An exuberant hugger.
A fan of "The Price is Right"
A lover of "dip" (ketchup), "hot dip" (wing sauce), and Shamrock shakes.
He had wretched luck. Terrible toxicities from every single drug, slow recovery times, blood clots, infections, and ultimately, he was the first of my patients to fail to respond to every treatment we offered.
When it became clear that everything we were doing was making him miserable and nothing we were doing was stopping the tumor from multiplying in belly, lungs, and bone marrow, his parents decided to take him home and treasure having him and his sister together for as long as they could.
He died recently, a few months shy of his third birthday and just 7 months after he came into my life.
When I think about him, I can't help but remember the way those tumor cells looked under the microscope. Large and angry, clumping together and pushing the normal cells aside. Bullies imposing chaos and pain and heartache on the innocent. You could see them in the act of replicating. Always fresh troops to make him thinner, weaker, and to make his parents eyes more empty and haunted.
Mostly, however, I think about how fine and soft his hair was when it started to grow back after the chemo. I remember hallway hockey games and the times he would let me carry him around, dragging his IV pole behind us. I remember how cozy he looked curled up in bed with his bear of a father and how his Elmo slippers were almost as big as he was. I think about his smile and how he glowed when the music therapist came in with her xylophone. You could always tell what room he was in by tracking his mother's laugh but he was generally out of his room putting smiles on the faces of nurses and patients alike. He was a kid and he didn't like to let being sick get in the way of his play time.
I miss him. I am lucky to have met him. I wish I could have done more.
I am glad that there is no more suffering.
Neuroblastoma is a terrible disease and I hope someday we have a cure.
Thursday, April 22, 2010
No Dairy, No Soy: Day 1
Food eaten today:
1 bowl of pears
1 banana
3 Ritz crackers
Small handful of Honey Nut Cheerios
Small handful of Annie's Organics Cocoa and Vanilla Bunnies
small amount of plain pasta
10 "fries" - (the day care bakes them)
1/2 bowl of oranges
3/4 of a container of mango-passion fruit coconut milk yogurt
Frightening amount of food for a 14 month old, but this is about twice what he has eaten the past 3 days.
Ounces of EO28 splash ingested since last night?
Less than 1
According to the website, children eventually become accustomed to the "unfamiliar taste and texture".
Common pediatric wisdom is that children need to be exposed to a food 8-10 times before acceptance.
So we try, try again.
1 bowl of pears
1 banana
3 Ritz crackers
Small handful of Honey Nut Cheerios
Small handful of Annie's Organics Cocoa and Vanilla Bunnies
small amount of plain pasta
10 "fries" - (the day care bakes them)
1/2 bowl of oranges
3/4 of a container of mango-passion fruit coconut milk yogurt
Frightening amount of food for a 14 month old, but this is about twice what he has eaten the past 3 days.
Ounces of EO28 splash ingested since last night?
Less than 1
According to the website, children eventually become accustomed to the "unfamiliar taste and texture".
Common pediatric wisdom is that children need to be exposed to a food 8-10 times before acceptance.
So we try, try again.
Wednesday, April 21, 2010
The soy-free vegan who eats meat and eggs
Yep, as of today, that's our boy.
This morning our wonderful GI doctor called me to tell us that allergy testing had come back showing allergy to dairy and soy. A lot of allergy.
To dairy and soy.
Anyone want to tell me how to nourish a toddler with no dairy?
Especially my not-quite-toddling toddler who, at this point, after weeks of worsening food aversions, pretty much only eats yogurt, string cheese, Pediasure, and Chex Mix (which needs soy protein, why? To make it a health snack?).
We are very relieved to have an answer and to have something to do. We are thankful it's not something that can't be fixed.
We are ready to move forward. We are eagerly anticipating the end of vomiting and the beginning of real weight gain.
It seems, however, that we have one more hurdle.
EO28 Splash
Formula identified by serial number isn't generally stocked of supermarket shelves.
In the interest of truth in advertising, I'd like to decode some of the marketing statements made on the web page linked above.
Statement: "100% non-allergenic free amino acids"
Interpretation: "tasty whole proteins broken down into sulfur flavored building blocks"
Statement: "$115 for a case of 27 boxes"
Interpretation: "You better hope insurance covers it because that's only a 9-day supply"
Statement: "Available in 3 great flavors"
Interpretation: "It's not Pediasure. It's not chocolate. Your 14 month old will sip, smile, shake his head, and cheerfully say bye-bye as he knocks the cup to the floor."
This morning our wonderful GI doctor called me to tell us that allergy testing had come back showing allergy to dairy and soy. A lot of allergy.
To dairy and soy.
Anyone want to tell me how to nourish a toddler with no dairy?
Especially my not-quite-toddling toddler who, at this point, after weeks of worsening food aversions, pretty much only eats yogurt, string cheese, Pediasure, and Chex Mix (which needs soy protein, why? To make it a health snack?).
We are very relieved to have an answer and to have something to do. We are thankful it's not something that can't be fixed.
We are ready to move forward. We are eagerly anticipating the end of vomiting and the beginning of real weight gain.
It seems, however, that we have one more hurdle.
EO28 Splash
Formula identified by serial number isn't generally stocked of supermarket shelves.
In the interest of truth in advertising, I'd like to decode some of the marketing statements made on the web page linked above.
Statement: "100% non-allergenic free amino acids"
Interpretation: "tasty whole proteins broken down into sulfur flavored building blocks"
Statement: "$115 for a case of 27 boxes"
Interpretation: "You better hope insurance covers it because that's only a 9-day supply"
Statement: "Available in 3 great flavors"
Interpretation: "It's not Pediasure. It's not chocolate. Your 14 month old will sip, smile, shake his head, and cheerfully say bye-bye as he knocks the cup to the floor."
****
Suddenly Nathan has two "tasty" medicines to take morning and night, one at lunch time, and a fairly foul tasting beverage to nourish and hydrate himself with. He's definitely going to grow up thinking "fruit-flavored" is a curse word.*****
We'll adjust. Tomorrow we'll offer Nate some coconut milk yogurt and some vegan bunny cereal and hope he actually swallows some of it. And, of course, there's always mango.
Tuesday, April 20, 2010
Tummy Troubles: Update
Well, it pretty much went the way I thought it would.
Even though I am sure it was delicious mixed with fruit punch, Nathan refused the barium.
Rejected it from the bottle and positively spewed it when they tried to syringe it down his throat. So, ultimately, after three failed attempts and a bloody nose he did get an NG tube. He screamed. He sweated. He writhed. He bucked.
I wore my lead apron and held his arms and sang his favorite songs.
And his scan was completely normal.
So we breathed a sigh of relief?
Sure. We're glad he doesn't need surgery. We're also sad we don't have a reason.
Tomorrow I'll talk to the GI doctor again and find out what the next step is.
Tonight I am on call and too busy to say more.
Even though I am sure it was delicious mixed with fruit punch, Nathan refused the barium.
Rejected it from the bottle and positively spewed it when they tried to syringe it down his throat. So, ultimately, after three failed attempts and a bloody nose he did get an NG tube. He screamed. He sweated. He writhed. He bucked.
I wore my lead apron and held his arms and sang his favorite songs.
And his scan was completely normal.
So we breathed a sigh of relief?
Sure. We're glad he doesn't need surgery. We're also sad we don't have a reason.
Tomorrow I'll talk to the GI doctor again and find out what the next step is.
Tonight I am on call and too busy to say more.
Monday, April 19, 2010
Tummy Troubles
It's not up to us, of course.
What we will find tomorrow has already been decided. It's already there. It won't change on our word or it would already be gone.
Nevertheless, Dave and I sat over dinner and discussed what we would like them to find. The worst game of "Would you rather?".
"Would you rather they found something that was surgically fixable or something that requires long term medicine?"
Nathan has his upper GI tomorrow. After almost 6 months of minimal weight gain. After literally plummeting off the height and weight curves. After a trial of antacid, a visit to a GI specialist, an ordeal of a blood draw, and a small fortune in Pediasure.
Tomorrow we just want them to find something. Something to tell us why our little boy eats a little less each day. Something to tell us why he often vomits up what he ate 6-10 hours before. Something to tell us why his meal sheets from day care are coming home empty and at home he refuses the food he has just asked for.
He's an absolute delight. A 1000 watt smile. Big hugs. Happy songs and clapping. Many words (which at least mommy and daddy can distinguish) and a cadre of rather unconventional animal sounds. Though he doesn't yet walk, he can and does get into anything he wants. If he were a less pleasant little boy, we may have realized sooner that something was wrong. Perhaps we would have been pushier with the "wait and see" outlook of our pediatrician if he had been fussy or if his cognitive development had slowed.
But here we are, with a 14 1/2 month old sweetness who is average size for a 7 month old. With the sympathetic looks of other parents on the playground when we tell them his age. With knots in our stomachs trying to decide if we want our son to need surgery or medicine.
Tomorrow morning Nathan will most likely refuse to drink the barium and they will put a tube down his nose to get it in. Then, he'll cry and beseechingly hold out his arms, and I will ignore his plea and hold him still so they can photograph the barium moving through his intestine. Dave will probably be standing outside the room listening to the screaming. We'll probably cry as well. I'll tell him it's to make him better. He won't understand. Hopefully when he is done we'll all stop crying and only Dave and I will remember it.
Hopefully we'll get an answer.
Hopefully we'll know how to fix it.
Hopefully our sweet, sweet boy's tummy will feel better, his food will stay down, he'll absorb calories, and he'll be too big for me to carry in no time.
What we will find tomorrow has already been decided. It's already there. It won't change on our word or it would already be gone.
Nevertheless, Dave and I sat over dinner and discussed what we would like them to find. The worst game of "Would you rather?".
"Would you rather they found something that was surgically fixable or something that requires long term medicine?"
Nathan has his upper GI tomorrow. After almost 6 months of minimal weight gain. After literally plummeting off the height and weight curves. After a trial of antacid, a visit to a GI specialist, an ordeal of a blood draw, and a small fortune in Pediasure.
Tomorrow we just want them to find something. Something to tell us why our little boy eats a little less each day. Something to tell us why he often vomits up what he ate 6-10 hours before. Something to tell us why his meal sheets from day care are coming home empty and at home he refuses the food he has just asked for.
He's an absolute delight. A 1000 watt smile. Big hugs. Happy songs and clapping. Many words (which at least mommy and daddy can distinguish) and a cadre of rather unconventional animal sounds. Though he doesn't yet walk, he can and does get into anything he wants. If he were a less pleasant little boy, we may have realized sooner that something was wrong. Perhaps we would have been pushier with the "wait and see" outlook of our pediatrician if he had been fussy or if his cognitive development had slowed.
But here we are, with a 14 1/2 month old sweetness who is average size for a 7 month old. With the sympathetic looks of other parents on the playground when we tell them his age. With knots in our stomachs trying to decide if we want our son to need surgery or medicine.
Tomorrow morning Nathan will most likely refuse to drink the barium and they will put a tube down his nose to get it in. Then, he'll cry and beseechingly hold out his arms, and I will ignore his plea and hold him still so they can photograph the barium moving through his intestine. Dave will probably be standing outside the room listening to the screaming. We'll probably cry as well. I'll tell him it's to make him better. He won't understand. Hopefully when he is done we'll all stop crying and only Dave and I will remember it.
Hopefully we'll get an answer.
Hopefully we'll know how to fix it.
Hopefully our sweet, sweet boy's tummy will feel better, his food will stay down, he'll absorb calories, and he'll be too big for me to carry in no time.
Subscribe to:
Comments (Atom)