LIVING

With EoE, Allergies, Asthma and a G-Tube

B.A.N.A.N.A.S.

The look in her eyes was one I had never seen before. As I held Tinleigh on my lap facing me a rush of emotions came over me. I wasn’t sure what my role was at this point. The nurse standing behind me quickly realized I had lost my composure and did her best to try and help our situation. Tinleigh was in such a fight or flight state of mind I don’t think she heard a word the nurse was saying to her. Her eyes then fixated on me again as she lunged her face towards mine once more to try and bite my face. It was the first time I had let any of my kids see me cry for what they were going through. I absolutely couldn’t stop myself. As Tinleigh and I locked eyes I tried so hard to think of a song to sing or the right words to say but nothing would come out. She screamed at the top of her lungs and again tried to bite me in the face. I sobbed. The beast that was in her had strength I didn’t realize she had as she stood right up on my lap. Luckily two more nurses had stepped into the room and assisted in holding her still. We weren’t holding her down, we could only hold her still. Then the nurse said one more, and it was done. We finished 37 skin pricks for allergy testing. It was nothing I had ever expected. My boys have had allergy testing I don’t know how many times. Sure they would whimper and cry a little when they were younger, but I had never seen anything like Tinleigh’s reaction. She was tested at 13 months and hasn’t been tested since then. Even during that round of testing she cried a little and that was it. I held her hands, they administered the test and that was it. I don’t know if it’s her age right now, the fact that she’s been through so much or a combination of the two with the added pain of the skin pricks.
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I pray for the day allergy testing is pain free.
Once the nurse was done and they handed us both tissues we wiped our eyes and made our way into the hallway. They told us to go for a walk. Get out of the room. As we walked down the hallway to go check out their awesome fish tank Tinleigh would let our random screams and attempt to hit me. I had to let her know this was unacceptable. Part of me just wanted to let her hit me as much as she wanted. I squatted down to her level, eye to eye, and told her even though she’s mad at mommy she is not allowed to hit me. She swung again and screamed. It was then I told the nurse following us about how as a baby when she was scoped she would wake up enraged and rip her IV out. We made our way to the fish tank where Tinleigh kept trying to talk as she was still half crying. I couldn’t say or do anything to make her happy. I felt horrible. The nurse then appeared and told me we needed to do Layton’s testing. So I left Tinleigh there with another nurse who didn’t partake in the administering of the test. Once in the room I held Layton on my lap just as I did Tinleigh. I think we were maybe 3 pricks in out of 32 when I just let the tears flow. Layton cried, but nothing close to what Tinleigh and I had just gone through.
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Once Layton was done the nurse brought Tinleigh back in. She was calmer. Calm-er. I blew on her back to relieve the itching. She saw Layton’s back and informed everyone in the room she didn’t want to see it. It was gross. I’m sure to a 3 year old it did look strange and scary. Finally Tinleigh’s 15 minute timer beeped and the nurse measured her welts. That went over just about as well as you can imagine. Not quite as dramatic, but not fun either. Layton’s timer beeped shortly after as well. We were done. DONE. Layton and I wanted to nap, Tinleigh was telling me what toy she was going to pick out at the store. Guess we were going to head to the store next.
As we waited for the doctor to come in and talk about the results it was really all I could do to keep myself from crying. I hate this for my kids. I hate that this is their life. Could we forgo the allergy testing? Yes. But Tinleigh wouldn’t be able to trial new foods. The testing definitely outweighs not being able to eat food. That girl thinks about “eating down her throat” probably 11 of the 12 hours she’s awake each day. I did keep my composure but when the doctor came in I really don’t remember our conversation. Only bits a pieces of it. We’re so lucky she’s completely awesome and wrote everything down for me along with all the testing we did. Somehow I managed to blurt out let’s just do bananas and squash for Tinleigh’s trial. Bananas and Squash? Nathan and I never discussed Tinleigh trialing these two foods next. I was definitely having an off day at this point. Happy to hear this news though Tinleigh could not wait to get to the store. Tinleigh had some allergy blood work done when she was put under for her scope in January. She had a number of things come back very high. She also had more show up positive on her skin prick testing this time around. So her list of Ige allergies seems to be growing, this scare me. Being on a feeding tube yet her allergies are expanding, how is this possible? What will her reactions be if she does come in contact with these foods? I hate allergies.
We covered Layton’s results and our plan is to try and start coconut milk on her to be able to wean from neocate. Layton’s cow’s milk came back negative. Our plan with that is to wait another 6 months, then we will gradually introduce her to cow’s milk. The only thing that came back positive on Layton was cherries. Now, not to get too excited, but it is promising. However, there are EoE kids that don’t have Ige allergies. Time will tell.
The girls and I made it  home and Nathan left for work. He had to stay home with Gage who had started running a fever the day before. I fed everyone and regrouped then we headed out to get Charlie from school. After that was a stop by the pediatricians office for a strep swab on Gage. Side note: we have been in the pediatricians office once a week for the last 2 months. Once Gage’s appointment was done we were off to the grocery.

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This little girl was SO excited to buy some bananas. We were all so excited for her. After we had the bananas in the cart we made our way over to the toy aisle where she picked out a new plush toy from the paw patrol family. I of course got stink from the boys about how they will be expecting a toy next week when they get tested. If they only knew how Tinleigh had reacted earlier during her testing. I assured them I would treat them to something as well. Home we went.

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This smile made everything we had gone through this morning so worth it. She agreed. She was so happy all evening. She ate about 2-1/2 bananas. The second half of the 3rd banana somehow turned into play dough. Which was fine with me. She was happy.

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She inspected the bananas and really checked them out. Asking me what the strings on the banana are. How do you open a banana? Can you peel it all then eat it or do you have to leave it on while you eat it? I will have to check my notes, I don’t remember the last time she ate a banana. So she’ll eat bananas for a week then we’ll try out squash. Once I was home this evening it hit me I had wanted her to trial cocoa this go around so I’m going to ask the allergist when we see her next week.
This evening, I broke out in hives from the stress of the day. It takes a toll on us allergy moms.

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March 17, 2015 - Posted by | LIVING

1 Comment »

  1. Oh Kara, I’m so sorry. In your mind, you know you’re doing everything you can-but it must just break your heart. Look how much she has grown since you left NY. There’s your proof. She looks so healthy and very happy. I always tell my kids, face the difficult times with as much dignity and grace possible…you are doing that so well! They are very lucky that YOU are their Mom!

    Like

    Comment by Tracy | March 18, 2015 | Reply


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