Micah's Scope

6:04am: Already checked in, waiting to go upstairs to the surgical ward. There's a baby screaming over there. He's starting to make me nervous!

6:25 am: Waiting upstairs now, and I'm not liking the bracelet!

6:47am: I'm bored, I think I will use the chair as a slide.

6:47am: And a pillow.

6:47am: I'm still not liking the bracelet.

6:48am: Now I'm playing duck-duck-goose with the chairs.

7:03am: I'm finally dressed for surgery. And still not liking the bracelet. And now there are two! The red signifying I have an allergy.

7:04am: I'm tired and tired of waiting. Curious George is on TV, but I usually watch him with Selah. I miss Selah!

7:25am: Mommy can come back until I fall asleep but she has to wear funny clothes! I'm looking forward to this nap I'm about to get. See how tired I am?

7:47am: What Mommy got to stare at. I'm the last one on the board, it's in red in the picture. First it said "OR in," then "Surgery Start," then "PACU" for Post-Anethesia Care Unit.

8:09am: The doctor came out as soon as the surgery was done to show Mommy my pictures. The first is my lower esophagus. The second is the opening from my stomach into my small intestine. The third is my stomach. The fourth is my small intestine. And the fifth is my upper esophagus. Pictures 2-5 look like they should. Picture one, the lower esophagus, is where the doctor found inflammation and a white coating. If you can see in picture 5, there are blood vessels visible. In picture 1, there aren't because of the inflammation and the coating. The doctor took biopsies from my esophagus, stomach, and small intestine and they will test it to see if they can determine the cause of the inflammation and to make sure there isn't anything else that isn't visible that is wrong.

8:28am: I started to wake-up, so they brought me to my mommy. I was happy to see her, but still pretty confused and tired.

8:35am: They gave me a cup of apple juice. With no water in it! It was SO good! Especially because they gave me a straw and I love straws!

8:36am: I ran out of apple juice!

8:37am: Well compared to this, that bracelet isn't bad at all! Can someone take this out, please!

9:02am: Headed home to see my dad and my siblings. And I found a bag of marshmallows as I got in the car! Score! I ate 11 on the way home, Mom was afraid it was going to make me sick! But I was fine!

Micah did great with the surgery. He was pretty tired of waiting, but what 2 year old wouldn't be? I was pretty tired of waiting, too! When we were parking in the parking garage at the hospital, he asked, "Where's Daddy at?" And then asked where Selah, Jonah, and Noah were at various points through the morning. I guess when you are #4, you don't spend much time without your siblings, do you? Especially in a homeschooling family! I think he was feeling a little lonely! Thankfully they allowed me to come back while they gave him gas to fall asleep. In the 2 minutes it took I think every person in the room commented on how well he did. I promise if you had taken him away from me to do that it wouldn't have gone well, seeing as how he is really in the strangers-are-scary stage. He did awesome, though. Laid on the table, let them strap him in and didn't fight the mask on his face. He just held my hand and stared at me the whole time, it was so sweet. And, they flavor the gas so the kids fight it less. Well, they must flavor it well, or he was really just really hunger since he wasn't allowed to eat, because he laid there licking the air in the mask. It was one of the cutest things ever. I wanted to take a picture but didn't know if they would like that. He was like a little lizard, his little tongue kept coming out  and moving around in the air. 

Once he was out, they lead me back to the waiting room while they did the IV and all. I was so grateful they put him out before the IV and that they let me back for the gas. Most hospitals do the IV first, and they also don't let parents back at all. When Noah was scoped at a few weeks old, they didn't allow me to come for any of it and he was awake and SCREAMING  when they finally brought me back afterward. It was traumatic for me, if not for him!

Overall, everything went very well. Micah was grumpy Friday but went back on his reflux meds Friday night and has slept through the night EVERY SINGLE NIGHT SINCE!! AND he hasn't been getting up until 7am or later! So I thought for sure we were just dealing with reflux.

And then the doctor's office called with the biopsy results yesterday.

I was thrilled at first, they said it could take until the end of the week to get them. 

I should have known better, it was Monday, after all.

Now let me be clear, it isn't THAT bad. 

It isn't cancer. 

It isn't an untreatable condition.

It's Eosinophilic Esophagitis. 

Of course, what I HEARD, was Esoph and itis. And I THOUGHT she said a fancy word for GERD. Except GERD (or GastroEsophageal Reflux Disease) IS the fancy word for reflux. But I was in the classroom with the kids, Noah was on my lap doing math, the little two were squealing as they colored each other with markers and Jonah was banging his head on the desk in protest of doing his schoolwork. I was a wee bit distracted. 

So I say, " OH GOOD! So we just keep him on his meds and we should see an improvement!"

Nurse Emily: "Well, no. We're going to have to treat this and find the cause. Reflux meds won't help."

Me: "I'm sorry, I must have misunderstood. What did you say he had, again?" As I dump Noah off my lap and walk out of the classroom.

Nurse Emily: "Eosinophilic Esophagitis. We call it EE for short. It means there's an allergic reaction causing the inflammation in his esophagus.And his number was 65 eosinophils per high powered field. That's pretty high. This poor child has probably been quite miserable, it's a painful condition."

Now I'm going to be honest. I heard one word there. ALLERGIC. 

Me: "No, no, no! That is exactly what I was hoping it wasn't! He's already on a gluten and dairy free diet. So it's something else...."

Nurse Emily: "Yes, there's something else, and next step is figuring out what is causing a reaction."

I'm seriously on the verge of tears here. This isn't a simple fix. This is a real problem. It is not curable. But is is treatable. And, we will FINALLY get to see an allergist, which I have been asking for since he was 8 months old. Every visit. The last time was in December, and the pediatrician said to wait, do the scope, and if nothing comes up on that, we will refer to an allergist. 

So, yay, now we get to see an allergist. 

We go tomorrow to the allergist. I'm a bit nervous, as it isn't a pediatric allergist. And the doctor's actually on vacation, so it is the nurse practitioner we will see. But it's a 4-6week wait for a pediatric allergist. And the kid is eating something he's allergic to and there is NOTHING we can do until we figure out what it is. So I'm praying that this person has at least HEARD of this condition. It's a fairly newly discovered condition, so it's not well known yet. Hoping something comes up on the testing to give us an accurate idea of what to eliminate. Most children with EE suffer from multiple food allergies. And if the cause isn't wheat or dairy, the most common other foods would be egg, soy, peanut, tree nut, or fish. He doesn't like fish or peanuts. He rarely gets soy because it not only makes me sick, but the estrogen in it is not good, especially for little boys. So the most common cause would be egg or tree nuts. At first I ruled out tree nuts, too- but then realized he drinks almond milk!! Don't worry, he's drinking rice milk now until we test him! There's an almost unlimited list of things he could be allergic to, and so we will just have to wait and see. 

There is some information available on this diagnosis, though a lot of it is still unknown. For now, they have prescribed an asthma med for him to swallow- rather than inhale- and it will help to coat the esophagus and allow it to heal. Assuming we get answers tomorrow about what he is allergic to (a very small percentage of people with EE have no food or environmental allergies as a cause- praying he does! There's not much they can do if he doesn't!) we will then alter his diet and in 6 months or so rescope him to make sure the esophagus has healed and there are no longer a high number of eosinophils present. 

He may or may not also have GERD. EE is usually misdiagnosed as GERD as it presents basically the same symptoms and cannot be diagnosed without a scope and biopsy. GERD meds usually do not help with the EE. So most people with EE finally find out because they are still having problems even on GERD meds. Which is exaclty what happened with Micah. However, we notice a dramatic improvement while he is on the GERD meds. This could mean he has GERD or it could mean the allergic reaction is causing the heartburn. So we will leave him on the GERD meds for now and try to remove them once the rest is under control. 

Prayers appreciated for us to get poor Micah properly diagnosed and help him to feel better! I will keep you updated with what the allergist finds tomorrow. I'm sure it will be a horrible day for him, but it can't be worse than living every day in pain!!!