Thursday, June 30, 2011

New News!

7/13/13:  I've edited this blog post as we've learned more about this disease.  We were given a lot of bad information at the start, and although I want to have a clear record of exactly what we knew (or thought we knew) at the time, I didn't want someone to find this blog post through an internet search and think that the information was reliable.  The edited parts are in red.

So, after our ER visit on Sunday, I called the GI doc and she said it was time to start an elemental formula (a formula in which the proteins are broken down so they are easy to digest and there is no way a child could have an allergic reaction to it--it's brand name is Elecare) and use an NG tube (a feeding tube that goes in through the nose and into the stomach, and gets taped to the face to be held in place) because the formula tastes nasty and Caleb won't drink it. Seriously, he won't even take a sip. While he's on the formula he can't have anything else, because we need to get all of the allergens out of his diet.

What an NG tube looks like:

I knew she was going to say that, and that's what I wanted her to say because I knew it was the only way for Caleb to get better, but it made me very sad. It changes a lot of things. We can't eat in front of Caleb any more, because he'll want to eat whatever we're eating, and he's not allowed to. And NG tubes are traumatizing for babies and toddlers. It's terrible to be pinned down while someone puts a tube down your nose. And I thought that Monday would be his last day of ever eating a chocolate chip cookie or a piece of pizza, because he's sure to be allergic to either eggs, gluten, or dairy. I think I cried more than I have ever cried in a day.

Caleb's last chocolate chip cookie (for breakfast, while watching Mickey Mouse Clubhouse):

Caleb's last supper--Panda Express noodles:

So, Monday night Caleb got an NG tube and we discontinued all foods other than his formula. Tuesday morning he had pulled his tube out, so I put it back in. I brought him to WalMart so I could confine him to the shopping cart long enough for his feeding pump to pump in all of his lunch. And I bought myself a sandwich and ate it in the parking lot in the front seat of the truck while Caleb was in the back seat. Pregnant women gotta eat, too! Tuesday afternoon he pulled the tube out again, so I put it back in. It was miserable for us both. I'd say it was probably the third worst day of my life.

Wednesday wasn't so bad.

On Thursday we visited with the GI doc. We talked about a lot of things, and we got a lot of good news! Here is what we talked about/what is going on now:
  • Along with his Elecare formula, Caleb can have green or clear gatorade, tuna, chicken, white potatoes, sweet potatoes, grapes, apples, and rice. The only thing we can add to any of these foods to flavor them is salt.  This is an arbitrary list and I have no idea how the GI doctor decided that these foods were ok.  Plenty of people react to these foods, so we're lucky that Caleb didn't react.
  • Give him less formula at breakfast because he's more likely to throw it up, and give him 10+ ounces over the course of about 4 hours while he sleeps at night. Give him a total of 28 ounces or more in 24 hours.
  • Keep him on the special low-allergen diet until he gains enough weight to be in the 5th percentile for his adjusted age. She said that he'd have to gain eight pounds at least. I don't know what chart she's looking at, because it seems normal/pretty good for a 17-month-old to weigh 26 lbs. At any rate, it'll take him a while to gain eight pounds ( least a year, I'm thinkin') and by then he'll still be small for his age. Either way, once he gains lots of weight we will add back one normal food every 3-4 days and see how he reacts. If he doesn't react well, we will see an allergist.  I don't know how the GI doctor decided this...two years later, at 3 years 8 months, Caleb still weighs just less than 26 pounds. We started adding foods back into his diet one at a time after he had a scope that was free of eosinophils.  His weight had nothing to do with it.
  • Caleb will need a g-tube (a surgically-placed feeding tube that goes through the side of the tummy and straight into the stomach). It will be much less traumatizing for him and for me to have a surgery and one night in the hospital than for him to have a tube constantly down his throat and taped to his face. I was surprised how happy I was to hear that he would need a g-tube. I thought I would be scared, or feel like a failure. I mean, everything we have done ever since Caleb was 2 months old was with the goal of keeping him healthy without a feeding tube. He went a whole year without an NG tube. It's almost like we're back where we started, but really we're making huge strides! So, next week we have a pre-op appointment and the week after that is the surgery. Yay!
  • Eosinophilic Enteritis is NOT hereditary!  Not true.  It is hereditary.  What a horrible lie to tell a patient.  I love our doctor for many reasons, but I've learned not to trust her.  That's sad, isn't it?  We just, once again, defied the odds and ended up with a major medical problem! (Did you know that there is a less than one percent chance of delivering a baby before 28 weeks? Yep. I think the odds of getting this type of EE are even slimmer.) Other types of eosinophilic disorders are hereditary (and more common), but not when they are in the small bowel. It's likely that he had a trauma to his small bowel at some point that irritated the lining of the bowel and it was never able to fully heal, making it vulnerable to the eosinophils, which are allergen-triggered. I'm willing to bet that the trauma occurred when he was about three weeks old and the NICU doctors wanted to add fortifier to his breast milk feedings. He couldn't digest it yet (he was too young and small) and he got filled with so much gas that his intestines got pushed up to the level of his nipples. Very sad. He cried a bit (which was weird for him) and he spit up. He almost perforated a bowel! They had to take him off of all feeds and put a tube into his stomach to suck out all of the air and food from his intestines. It was very serious, and very sad.  It's possible that this trauma was the "trigger" event that caused this autoimmune disease to start, but no one knows exactly what causes EGIDs, so it's just a theory.  Either way, trauma trigger or not, EGIDs are hereditary.
  • Caleb's type of EE is NOT PERMANENT! YAHOO!  Lies again.  This doctor needs to read up on this disease.  This false information caused a lot of heartbreak.  This was the best news of all! Our GI doc gets about eight patients a year with Eosinophilic Enteritis, and she has had a 100 percent cure rate! Most patients get cured easier than Caleb, it seems, but she's still confident that he'll get over it with time and with the right nutrients. So, he WILL get to have chocolate chip cookies and pizza again some day! Yay!
So, there is a very detailed and somewhat long-winded explanation of where we are at now (and where we will be for a while).

Playing in the dirt while getting an afternoon "snack" through the tube:
He can carry his feeding pump and his formula on his back in this handy backpack (as long as there isn't a lot of formula in there to make it too heavy for him):

Sunday, June 26, 2011

And again...

Caleb is sick. But this time I'd be surprised if it was a bug. Here is how it all happened:

On Monday I talked to the GI doc and we decided that the prednisone wasn't helping, so he got his last dose on Tuesday and we started a new acid medicine (I'm not sure why we started the new doesn't make sense that it would frustrates me).

Tuesday and Wednesday Caleb ate like a pro! I've never seen him eat like that before!

On Thursday, he refused to eat any solid foods at all, but he was still drinking plenty of pediasure and acting like himself, so I wasn't too worried.

On Friday the solid-food-strike continued. He was still drinking enough (but really, does he ever drink enough? No.) so I wasn't too concerned, but I decided to call the pediatrician just to be safe. I talked to a nurse who said to wait it out and call the GI doc (who was out of the office for the rest of the weekend).

On Saturday he acted normally (aka, not eating) but in the evening he threw up a significant amount and then fell asleep in the living room a few hours before bed. Then he threw up again. And again. Then he said, "all done." And threw up again. Nate and I cried. And we put him to bed.

That brings us to today. I woke up early for church (it was Nate's turn to stay home with Caleb, since Cal hasn't been to church since he started on the prednisone, because it weakens the immune system and he could get very sick...little tangent)...I woke up early for church, and I heard Caleb heaving in his room. He had no energy to cry (makes me wonder if he heaved all night long without anyone to comfort him. Sad.). So I patted his back while he retched and retched and retched. Nate slept on a blanket on the floor so Caleb wouldn't be alone. They were still there when I got back from church four hours later. Every time Caleb would drink water, he would throw up. If he didn't drink water, he would dry heave. And he would lay listless in our arms. He threw up so much that the blood vessels in his face all came to the surface and he had red spider veins all over his little shallow cheeks. So we brought him to the ER.

At the ER, they gave him an IV and took blood for tests. I insisted on doing the RAST allergy blood test (which they had never heard never thought I would need to have such unique medical knowledge). He would need the RAST testing done eventually, so I thought, "you might as well only poke him once!" Thankfully they obliged, even though HE RAN OUT OF BLOOD!!! Seriously. The vein didn't collapse, they could still flush saline into it, but there was no more blood to come out of it. It was sad. They went to great, terrible lengths to get every drop of blood possible. Then they gave him 100 ML of fluids.

Then the blood tests came back saying that Caleb was quite low on electrolytes, so they tried to give him 50 ML more of fluids, but the IV went bad. So, they had us give him 2 oz of pedialyte, which he scarfed, and when he didn't throw it up they sent us home.

Then he slept for two hours on the living room floor, he drank a few more ounces of pedialyte and a bit of raspberry sherbet, and we gave him a bath and put him to bed early. And he fell right asleep.

The cause of his ailment is one of three things: 1) a bug, 2) abruptly stopping prednisone, or 3) his EE is just plainly out of control.

It's likely not a bug, because he doesn't have diarrhea. It's likely not from the prednisone, because he was on such a low dose that the GI doc said that it wouldn't hurt to stop it abruptly.

So, that leaves us with lovely door number 3!! And what have we won, Stan!? A whole, new path that no one ever wants to go down! But I'm ready!

It's cruel to let a child suffer like this. I can't handle it any more. Caleb is obviously in pain and we can't expect it to go away until we get rid of the allergens in his diet. So, tomorrow when I call the GI doc, I will demand that we start Caleb on an elemental formula, that we have access to NG tube accessories in case he doesn't drink enough of the nasty-tasting formula, an appointment SOON with an allergist (I made an appointment with one in OCTOBER), and knowledge on how to do the elimination diet. Yay (not).

It makes me want to cry thinking that Caleb may never be able to have ice cream. But it's worth it to make sure that he can live a pain-free life. People these days find too much joy and fulfillment in food. Caleb will just have to find it elsewhere. And that's the diamond in the rough. We just have a lot of years filled with a lot of rough.

It's hard to say that All Bad Things Must End when your child is diagnosed with a chronic condition. The condition won't end in this life, but the pain will. I look forward to that.

Monday, June 13, 2011

It's my turn...

I WIN again!

We went out to eat at Denny's tonight (we had a coupon and the lime growing inside of me wanted an omelet).

There were green peppers on my omelet. Caleb likes green, red, and yellow peppers. So I gave him one. He put it in his mouth, made a face, and spit it back out. Then the crazy kid picked it back up and put it in his mouth and chewed it once or twice. That's when his face turned red. He spit it out and started whining. Then started crying. Then Nate tasted a pepper.

It was a jalapeno.

I win the Worst Mom Ever prize this week.

I'd like to know when you all win the prize. Sometimes I feel like I'm the only one.

Wednesday, June 8, 2011

Oh, the things he does!

  • At the end of every prayer he says "night-night," even if it's at the dinner table.
  • After giving a kiss to something, he has to say "bye-bye."
  • After saying "bye-bye" to something, he has to kiss it, including when I told him to put my medicine bottle back on my night stand. Yes, he kissed my medicine bottle and told it bye-bye.
  • He will spend over half an hour picking up books and bringing them to me to "read" them to him, but then turns the pages too fast for me to actually read anything.
  • Has memorized where every bear, ball, dog, horse, duck, Santa, and sock is in every book he owns and will point to it and say what it is when he turns the pages. Sometimes he doesn't even look at it. He's a fast page-turner.
  • Will "read" books on his own--saying "bababababababa" with inflection for each page.
  • Says "all done" when he's done eating something, done playing with something, or wants to be done with something that I'm doing to him, i.e. brushing his teeth, riding in his stroller, cleaning off his face, etc.
  • When he is "all done" eating something, he knows that he's supposed to put it in the top corner of his high chair tray (instead of throwing it on the floor). Lately, he insists on us taking whatever he's all done with.
  • Thinks that dryer sheets are for wiping noses. Yesterday he climbed up on the couch just so he could wipe my nose with a dryer sheet. So sweet.
  • Thinks that out of every window there is a "horse." The back window in our living room (which he isn't tall enough to see out of on his own) always has a nice view of the horses. He wants to see them out of every window now.
  • Uses every sort of device as a telephone to hold to his ear and say "hi" and "bye-bye" to. I'm talkin' remotes, baby monitor, shoes, everything.
  • Will use a spoon on his own if I put something on it for him (like black beans). He only does it because of the novelty of having a new way to eat. I fully expect that he'll stop doing it before too long. How can you expect a kid to eat with a spoon if he just plain doesn't want to eat at all?
  • Is back to not wanting to eat much. He's still drinking more than before he started the prednisone, but I don't know if that's because of the medicine or because we now lay him down with a bottle to drink in his crib. It's a concern that even if he feels better, he won't necessarily eat better because he's learned after all this time that eating is not fun, no matter what, and it's ingrained in his brain. But we've been doing everything we can to make eating fun, and to leave Caleb in control of what and how much he eats, so he doesn't feel any pressure. I'm fairly certain that once he does actually feel better, he will eat more. So at this point I'm thinking that even with the medicine, he still doesn't feel good. :(
  • His diagnosis is actually eosinophilic enteritis (EE), not gastroenteritis (EG). The only difference is where the allergic reaction takes place in the digestive system. And it turns out that my mother-in-law's cousin has five kids who all have EG. So, even though my side of the family has hosts of various digestive problems, this one can be blamed on Nate's genes! YAY for not taking the blame! (But we both can be blamed for Caleb being tongue-tied. My dad was tongue-tied and Nate's aunt was tongue-tied. Bummer.)
  • At his latest weight check, he gained a few ounces! He is now up to 17 lbs 11 oz. Only a few ounces behind his 7-month-old cousin. :)
  • Caleb gained 3 pounds in the three months before his birthday. He has gained almost three pounds in the past seven months. Yes, growth slows down at this age, but it shouldn't slow down that much.
  • I'm obsessed with my son's weight and it's driving me crazy.
  • Last but not least, he tries so hard to form sentences with his words. His therapist said that would come when he knows about 50 words, and he's about there! Mostly he wants to say "bye-bye dada" or "bye-bye dog," but it comes out "bubba-d." SO CUTE! He doesn't get frustrated by not being able to say it yet, but I can tell he's thinking about it. He just doesn't know how to make his mouth work to do it right. Hopefully he'll figure it out before the tantrum stage so that we can avoid miscommunication frustration.

Hello, Week 12!

taken 6/6/11 (11 weeks 5 days)

Today I am 12 weeks and the baby is the size of a lime. Holy smokes, that poppy seed grew fast!

The top of my uterus is finally above my pubic bone, meaning that before too long my flabby belly will become hard. (Right now my big belly is just internal organs being shoved upward and outward. Gross, I know. At times it looks and feels like a spare tire, but it can't be, because I haven't gained any weight. I guess that's just what happens when you're short?) The baby's brain and nerves are developing, and it now has reflexes! If I poke my belly, it will squirm away from the poke. Cool, huh?!

Thankfully, I'm not quite as sick as I was before. I still usually take 1/2 of a zofran pill every day. My headaches are getting waaay worse.

Water sounds repulsive to me. The only things that I want to drink are chocolate milk, gatorade, and sparkling cider. And snow cones. With my last pregnancy, in the first trimester I craved spinach leaves and carrot sticks dipped in spicy cilantro-lime ranch dressing. A box of chocolate cookies in the pantry sat untouched for months. I hated the thought of anything chocolate. THIS time...Little Debbie snacks are my best friends. And every single morning I eat a crunchy oats 'n' honey granola bar. Yummm. I just saw two commercials--one for twix and one for kit kat. I just about called Nate to ask if he'd get some from the vending machines at work and bring them home for me. I'm thinkin' my weight will increase much more easily this time around. Yikes. I hope the second trimester treats me well, so I can at least think about eating healthy things without getting sick. I want an easy recovery, like last time! And I want to take care of my little lime!