|Carter at PCMC before his procedure in their playroom|
I know a lot of people would wait to write until they could say something to the effect of: "...and after this trial this is what I learned; this is how I will conquer said trial, and really...I'm happy the trial happened."
Um. Check back with me in awhile for one of those--but not too soon, mmmkay?
Carter's pediatric gastrointestinal doctor called back with the results of his blood work, ENG, and flex sigmoidoscopy.
He said that Carter's esophagus, small intestine, and top of the stomach are very inflamed That he has eosinophilic esophagitis and that he was allergic to every single food he tested him for. The list of foods he's allergic to was quote "too long" to go over.
I really had hoped that he wouldn't have this. To me, this was the worst case scenario. I am just so bummed.
What does this mean?
Well, I'm not even sure yet. He said he's going to have to work with his allergist and a dietitian to figure things out. The probable course of action will be to put him on a strong acid blocker, and a swallowed steroid to help his esophagus heal. Then, we'll have to work with his allergist to come up with a list of foods he can eat, so that his esophagus can stop having these reactions. It's such a disorder/disease...I don't even know what to call it...that it requires multiple doctors working on the case together. Nothing will probably ever be simple.
In layman's terms, (from someone who is still trying to learn) it is basically that his esophagus has allergic reactions to foods. He can seem fine on the outside, no rashes, or normal signs of food allergies or otherwise--but that his esophagus is hating food basically.
This does explain his poor weight gain/weight loss, frequent vomiting, gagging, trouble swallowing textures, and trouble breathing (since his esophagus is so inflamed).
He said that he's hoping Carter won't truly be allergic to all foods, but that his system is just so overtaxed right now that it's rejecting everything.
I'm just kind-of mad.
I'm going to say a lot of stuff that I already know the "proper solutions and answers" to--but I feel them anyways. They are legitimate. I know that I'll talk myself down from them, but right now, I'm wading through them. So, I'll just list them:
Why my son?
This isn't fair.
I hate this.
I hate food.
This is going to be so hard.
I'm afraid my son will feel different.
Which is why I'm so glad that I have the husband that I do. Unfortunately, Claudy had a really difficult childhood. And, because of that--he's a lot tougher than I am. He never asks "why" or gets caught up in pity, or wants just an easy life. He reminded me that we knew we would come to earth and have imperfect bodies. He reminded me that everyone has their trials in life--and that this will just be Carter's. He told me not to jump to conclusions, and to wait for more information. He's right. Of course he's right.
But, my overly protective mother brain is still in mourning.
Many children who have this, end up only being able to drink a special formula. AND NOTHING ELSE. So much so, that they have to stop eating orally and only eat through a feeding tube.
I know feeding tubes are a great invention--but it terrifies me. I am really hoping it does not come to that. I've seen videos like this one, (only watch it if you want to cry!) and seen other things of EOE patients that just make me want to cringe. I just want to scream, "NO! Not my son."
But, here we are. I thought I'd feel better after the diagnosis--and perhaps I will. But, not right now. Not when it's such unpleasant news.
Thankfully, I have a friend whose son also has it. Go figure for something so rare. I'm grateful to be able to get info from her--but even she said that it just plain sucks Carter has it, and that she feels terrible for me. I appreciate her frankness and that she's being real--but that's when you know it's bad! She couldn't assure me that everything will be OK, or that things are solvable.
The only glimmer of hope I feel is that we can hopefully get him feeling better and gaining weight. But, we're still so far off from having a real game plan. AND--his allergist is booked until March 1. They said they'll try to get us in sooner, but I'm like REALLY??? So, I could possibly keep poisoning my son with foods that hurt him until then?
I just keep thinking of MORE doctors appointments (Carter screams at every single one because he's been so traumatized) and MORE blood work (again--lots of screaming and crying) and MORE anesthesia to do MORE scopes because the only way to know if the medications are working is to go in and see. SO MUCH TO LOOK FORWARD TO!
I truly feel as if I'm in mourning. As I'm sure every parent does when they find their child won't live the idyllic life. I get that parents go through a lot worse things. I keep telling myself, "It's not leukemia. He will live."
But, let me rid myself, and purge some of the hopes and dreams I had for him. Let me list the things he won't get to participate in, or added worries we'll have to carry around. Hopefully I can get over it. My husband says I need to. That I can't hold on, and that in not doing so, I'm only making things worse. He's right. But, I almost feel entitled to be upset. So, here goes the things I'm going to miss:
--Halloween, him not being able to eat candy
--The entire month of December, him not being able to eat goodie plates people bring over
--What the heck do I put in his stocking for treats? How do I make it so he doesn't envy his future siblings when they eat their treats?
--How do I not feel guilty when I get to eat more than 8 foods?
--Baking for my kid. I love baking. I always pictured myself having warm, chocolate chip cookies waiting for him when he gets home from school.
--Classroom treats, having to be the only kid who cannot eat what everyone else is
--Birthday parties, him not being able to have cake like everyone else
--Not being able to take my son to new restaurants and enjoy new foods together, or share food, or eat off each other's plate
--Worry that whenever we travel, if we don't bring enough foods, that we won't be able to find something for him to eat to fit his paradigm
--Worry about the effects of steroids on him at such a young age
--Worry about further procedures and anesthesia
And, basically EVERY OTHER HOLIDAY. Why is food so ingrained in our culture? It's what we do for fun. Imagine, if you could not think to yourself "I feel like eating xx" today. Or, "Let's go get a treat!" Yep, pretty sure I won't be able to say that to him.
Maybe not. I did hear of a not-so worse case scenario yesterday, and it gave me hope.
So, I'll try to get over. I'll try to not jump the gun.
I sometimes try to tell myself, "It's JUST food." But, then again--food is everywhere, food permeates into our culture, our holidays, our family traditions, and has to be dealt with at least three times a day. There's no escaping it.
As I sat on the couch, sulking, I looked at my son. He was giggling and was walking for the first time while holding our hands. Before, he'd only walk along the furniture. And, the thought came into my head, "He will still be happy. He will still learn, and develop." I just have to realize it won't be how I want it to be. And, that hurts.
My goal for him is that he won't really notice because he'll just grow up with it. It will become my "new normal" but hopefully it will just be all he knows.
I was asking Claudy if we should try and explain when he gets a bit older that he has "special" foods. And, wisely, he said no. He said we cannot let him feel pity, or feel that it's different. He just needs to feel that this is the way it is. That life is hard, and that we must be examples of moving on and not dwelling. So, as much as I want to kick, and drag my feet I realize I have to be upbeat for my son.
And, I guess when you have to do something for the sake of your kids--you dig down deep and you find the strength to do it.
I will do whatever I need to, to help him feel normal and find some relief from this. And, I will find a way to only be upset when he is not around, so he will not feel a difference. I must. God grant me strength and patience--both of which I'm running low on. I'd love to go eat some comfort food, but it just doesn't seem as tasty or right knowing that my son will probably never enjoy food that way.