Day one, NJH

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DAY ONE, August 7th am

We checked in at NJH and as expected, most of the morning was info gathering, health and treatment histories .
The child life specialist, Courtney, came in with a bag of goodies -insect bath toys, teddy bear and super soft blanket for Z. These child life specialists are part of the team that shows up for every challenging or painful procedure to distract or aid in any way that will help make the experience better for the child. They are different from the social worker assigned, who also works as a part of this team and present for each part.
We had our first meeting with our main doctor Dr. Leung ( the guy in the food challenge video!) and discussed all her previously diagnosed allergies, reactions, diet, food we are avoiding and atopic dermatitis. He suspects she has the gene for a filaggrin mutation common in individuals of Irish and German descent. Though Garland and I do not have eczema, there is a family history of this in her paternal grandmother and he told me that in a study of this mutation he’s seen it skip generations many times. If this is the case,wet wraps are still important in repairing the skin barrier but there is a separate lotion for daily and constant use that will reinforce the barrier. We will wait for the genetic testing to come back before using this, since it won’t be of much help unless she is positive for the gene mutation.

After Z took a nap the day stepped into gear and we were scheduled for skin testing.
Z was instantly clawing and struggling out of our grasp but with the combo of a movie, dum dum and iPad Princess dress up app (the paid version!-well played child life specialist) we got her through he 15 minute wait to let the results unfold on her back. When I glanced at the wheel sizes I quickly looked away, and just asked the CNA to confirm if walnut, peanut, egg, milk and wheat were positive. Nothing new there, but it was negative to onion, pine nuts and macadamia nuts, and positive to garlic. Z overheard garlic and smiled the biggest smile, since she always pretends to be Mavis Dracula who has an allergy to garlic.
Though this is only one small portion of an allergy diagnosis, it still was difficult to see such intense reactions.
We followed with her first NJH wet wrap bath. as expected, this bath was a challenge and you would have thought it was an acid bath if you were standing outside. Z gets upset by mere tears falling down her cheeks, let alone buckets of water. I watched while the nurse applied vanicream and desonide and wrapped her up and she was released to the play area.
We explored the hospital grounds a bit in her wraps and it was wonderful to get outside in the gorgeous cool weather.

We prepared for our nighttime bath and Z started working up quite a meltdown. Then Jen, the night nurse appeared. Z’s eyes lit up when she heard her name, and apparently only very wonderful and magical people are named Jen. Nurse Jen exuded a calm and did the impossible: Z willingly soaked her face, smiling and enchanted under Jen’s spell the entire time and wraps went well.
Because Z’s skin needed so much healing, and that healing goes down the drain each night while she scratches, the doctor prescribed Ativan in hopes that it would calm the Itching. Unfortunately it turned sleepy post bath Z into a manic, screaming terror. She slept about 3 hours and woke up vomiting until mid morning the next day.

See below for a pic of Nurse Jen, the hero of this long, long night.

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One response to “Day one, NJH

  1. thank god for this nurse! and the child life team sounds amazing! i know how hard it was to see what came up on the allergy testing. and also promising in some way to hear about the filigrin mutation-i’ve begun reading about it and so much seems to fit. it sounds like zoey has been amazing given all of this really hard tests this day. hang in there- i am praying so much for both of you.

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