LIVING

With EoE, Allergies, Asthma and a G-Tube

My little fireball

Tinleigh,
When you were 14 months old we scoped you for the first time to see if you had Eosinophilic Esophagitis. We had hopes from the beginning that being a girl you may be the lucky one and not have it. You also only tested positive to 3 foods, where as your brothers both tested positive to around 20 foods. This boosted our hopes a little more. So the week after your big brother Gage got his feeding tube, mommy took you to the hospital to have your first scope.
When your turn arrived mommy hugged and kissed you then handed you to the OR nurse. I then warned the nurse that you more than likely would wake up super cranky. Your big brothers never had any issues but I just knew you wouldn’t be very happy. As I nervously waited in the waiting room I knew you were in safe hands. Before I knew it I was being called to meet with the doctor. My hands were sweating and my heart was pounding. This was the big moment. As the doctor entered the little consult room she grimly smiled then said “I have never seen a 14 month old with an esophagus that bad”. I cried. Mommy cried for you Tinleigh. This horrible disease was in you too. I cried because no one knows what your future will be like. I also cried because I fear you won’t want to have your own babies giving them this horrible disease as well. Mommy also felt a huge feeling of exhaustion. It’s a lot for mommy to take on. You can bet the world though that I will always give my all to keep you as healthy, happy and as “normal” as I can.
The doctor and I spoke a while about everything. She was very comforting and sympathetic. She knows just how frustrating EoE is and having 4 people in our family with it, she knows what we face. I wiped my tears and went back out to the waiting room. No more crying, time to get on with it. I still had 45 minutes before I would get to see you. About 10 minutes later I was called to the desk. There was a phone call from the recovery room for me. OH NO!!! I was so scared to pick it up. The nurse on the other end sounded worn out. She asked if I had a bottle for you then asked that I bring it right up. She said you weren’t a happy camper. I chuckled to myself then got your bottle ready as fast as I could and headed up to see you. As the nurse opened the door to the recovery room I could hear YOU. I walk in and a few curtains down there was another nurse bug-eyed holding you and trying to do all she could to make you happy. Oh Tinleigh, you were giving them your everything. The nurse handed you off to me. You weren’t even happy to see me. We tried your bottle and you threw it. They said you hated your IV. We kept trying to put a sock over your little hand. With some babies that works because they can’t see it anymore. Not you. You knew that thing was still under there and kept ripping that sock right off. They even had to move your heart monitors to your back because you kept pulling them off. After about 15 minutes of mommy sweating, singing, bouncing, rocking and giving it her all you finally took a little tiny bottle of sugar-water from the nurse. We laid you on the little bed and you drank it all. As soon as it was gone you sat up, threw it and screamed for more. The nurse ran right over and got you another one. You drank that one too. Then, you were semi happy. We could now move you to the second recovery room. Upon arrival you gave all the nurses a huge smile and giggled. Tinleigh you sure do know how to play it up. Then they wheeled in a 12-year-old boy across from you and slightly pulled his curtain closed. You stood right up on your bed and bent over trying to peer around his curtain and waved to him. I could hear him saying hi back to you. Of course all the nurses laughed. Then you grabbed your tiny bottle and held it out as if you were offering it to him. You put on quite the show. You finally chugged your regular bottle and another little bottle. Finally, it was time to go home! We kept a little bottle as a souvenir. A month later it’s you number one favorite thing to drink from.

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Tinleigh the following week your GI doctor called me herself. She was genuinely sad for us. She got right to the point and let me know that your mid eosinophil count was 70+ and your distal was 70+. You had a huge amount of inflammation which explained why you choked all the time. You choking all the time was mommies way of knowing in the back of her mind that you probably had it. It was why I wanted you scoped in the first place. There were striations all the way around and many clusters of very thick white eosinophils. Your esophagus was actually worse than Gage’s at his worst. At this point the doctor knew we were moving and wanted to make sure and tell me that she suggested we do some genetic testing at this point. Our family may have something a little more going on. We spoke about your diet and putting you on steroids. I knew the routine.
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Images 4 and 5 show the striations and eosiniphil clusters. Not much room to swallow food there.
After hanging up with the doctor I had some choices to make for you. We already had you off of the 3 foods you tested positive to and the doctor suggested we also remove soy. You had been on soy formula since you were 6 months old because of your dairy allergy. I always had a slightly bad feeling about that formula. Since you didn’t have any outward reactions we thought it agreed with you, so we used it. The rest of the diet the doctor said was up to me. You were also off of all nuts and fish because typically in an allergy family you don’t introduce those foods to a child until they are 3 years old. I had never given you an egg yet so I decided to just keep it that way. You sometimes became gunky when eating bananas and beans so those went out. You always choked when eating potatoes, that wasn’t a hard decision. So your new food elimination diet included soy, apple, banana, chicken, dairy, all fish/shellfish, all tree nuts/nuts, eggs, beans, potatoes and we cut back on corn. For mommy it was like you took Gage’s place. Things got easier feeding him, but a lot harder feeding you.
Tinleigh I have no idea what this horrid disease has in store for you. I pray that by the time you are scoped 3 months later there will be much improvement if not back to zero eosinophils. If you are not better at the next scope I fear our road for you will automatically be the feeding tube. Because you don’t test positive to anything else and we have removed everything we know to take from you that leaves us with nothing else to do. Yes, we could remove wheat but mommy really has no idea what she would feed you. When Gage didn’t have wheat he had a few things going for him. He still had dairy in his diet and he had more teeth! Mommy doesn’t know how to keep you thriving and growing. Please don’t worry or fear though because I will try my hardest and do my best for you. That is my job as your mommy.
So on December 11th 2012 Tinleigh, you were diagnosed with eosinophilic esophagitis.
Just hold mommies hand and we will get through this together with your brothers and daddy.
Love you.
Mommy

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January 15, 2013 - Posted by | LIVING

8 Comments »

  1. Would it help to try the Elecare or Neocate formulas? Since she is still bottle-fed, you may be able to avoid the tube for at least a little while?

    Thinking of you all…and having to move too….wow. Keep up the good fight, Mama 🙂

    Like

    Comment by Kelly Morris | January 15, 2013 | Reply

    • The Gi doctor has me putting a scoop of Gage’s formula in each of her cups of milk now. Since she’s on rice milk and it doesn’t have enough nutrition for her adding the elecare jr to it helps some. She doesn’t love it but will drink it when it’s time to nap or go to bed. I actually just took her off the bottle when we moved. She really didn’t like her big bottles anymore anyways. She does still love her tiny bottle though. It’s funny.

      Like

      Comment by livingtheallergylife | January 17, 2013 | Reply

  2. omg, i have never seen this kind of emotion in you. i’m crying….oh the stupid disease that our children go through.

    Like

    Comment by KRISTINA MARTIN | January 15, 2013 | Reply

  3. Wow. Can I just say, “You rock!”? You are doing a great job with your kids. Thank you so much for posting about this stuff. That way I know what specifically to pray for you in regards to food and such. We have a peanut allergy, but it’s nothing compared to what you deal with all day. Know that you are being lifted up in prayer. God is with you. Never forget that.

    Like

    Comment by Abbi McDaniel | January 15, 2013 | Reply

  4. Sensing you prayers for Tinleigh, you, and your boys. You have such a positive attitude in a very difficult situation. I pray that God will give you strength through all of this. Your kids are blessed to call you mom!!

    Like

    Comment by Alison Steckler | January 16, 2013 | Reply

  5. No matter what, you are a rockstar to me. God gave you these children because he knew you were the perfect fit for them. I know it’s hard, but you are an amazing, STRONG, woman. Keep relying on your faith, friends and family. We are all here for you! Hugs, friend…

    Like

    Comment by Jessica | January 16, 2013 | Reply


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