It’s working! Day 3 (friday)

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After a long second day we all slept solidly. Z slept in her wet wraps (2 days of wet wraps, 5 wraps total) and woke with the clearest skin I’ve seen in quite some time. I felt fantastic.
We ate quickly, since there is a strict no food in the room rule in the Ronald Mcdonald house. there is a beautiful kitchen and eating area but Z has been flaring and itching every time she sets foot in there. Last night there was a wonderful group of volunteers cooking dinner for guests when we went in to make Z dinner. Whatever they were cooking bothered Z’s breathing and skin immediately and effected her for most of the night.

Arrived at 8:30 to do our bath/ wrap which Z was surprisingly excited about but were told to hold off since Dr.Leung was coming in. In that short delay, Z became extremely antsy and was quite off the wall in play mode once the doctor arrived. We discussed last night’s flare and he told us that Z may have inhalant reactions, but it could be a result of her skin barrier still healing, and therefore permeable to allergens, or leaky. When we are able to rebuild her barrier she should be able to touch an allergen without reacting.
He asked us to keep in mind the four triggers which are
1. Impaired, or leaky skin barrier ( which will apparently react to any high concentration of chemicals, even if they are not allergens)
2.true allergens ( mitigated by a good barrier)
3. Infection
4. Emotions- all of them
From what he’s observed over the last few days, and from the notes from the rest of the team working with Z, that she is considerably more active and emotional than other kids her age, and that it may be impairing her ability to heal. He recommended that we work closely with the clinical social worker Jennifer Darr on behavioral modification related to her itching. He said that though Z does have this chronic disease that is truly physical, there are kids who really respond to this portion of treatment.
He discussed food challenges and asked us which foods we would most like to see back in her diet. Wheat! Milk! Eggs! Pending results on blood tests, we are hoping for Monday food challenges.
Throughout the conversation, Z reinforced Dr. Leung’s theory about Z by listening to his heart and deciding he had none, then hanging like a monkey from a tree (dad) and launching onto the bed. I practically threw her at the social worker, Jennifer, and Garland and I escaped to the cafeteria for donuts and coffee.
All before 9 am…

We are still doing three baths a day since the area directly under her nose is itched hourly and is the most difficult to really cover with the wraps. Her hands look loads better and seem healed at first glance but will revert to flared quickly between baths.
Baths and the wet wraps that follow are a struggle. The nurses and I are trying everything to get her to stay still during the slather and wrap but it ends in Zscreaming in frustration because she’s not allowed to wiggle or jump. Sticker charts, bribery, and careful explanations aren’t working, so Jennifer the social worker and child life specialist want to see how our weekend baths go at Ronald McDonald House and will make this a priority on Monday.
I feel frustrated that I can’t figure out a way to make this fun or interesting for her, and instead see her behavior all around regressing.

Z had skin testing for environmental allergens this afternoon and we weren’t surprised to see cat, dog, dust and grasses come up positive. I was surprised when she settle in for a nap on her father while the wheels developed.

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We finished off the day with a bath and a nasal rinse. Thankfully, Jennnifer came in well before and talked with Z for a long time to ease any anxiety. Z almost seemed willing.
It took Garland, myself, Courtney in child life, Nurse Shelby and Jennifer to hold her down. When we were finished she jumped off of my lap and ran away down the hall yelling that we were nuts and “that was not cool!” over and over.
The nasal rinse was rough, but there was an immediate difference in the swelling and puffiness around her eyes. It’s amazingly effective.

Three very challenging days of nonstop learning but all in all, this is starting to feel really good.

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4 responses to “It’s working! Day 3 (friday)

  1. i love the picture in the pink jumpsuit you posted above. it completely shows her creative, joyful soul. it makes sense that shes full of anxious energy and seeming to react to everything with a whirlwind of emotions-such a normal reaction to abnormal events/place/things. you are truly one of the few people i know that makes ANYTHING fun and like a game…but this one is a tough one to disguise:) the one thing i thought about is maybe it would work if you wore a bathing suit and actually got into the bath with her for a soak…i know it sounds crazy and probably not real conducive to it at the hospital, but thinking this would make her feel less like everyone is giving her a bath, and instead feel like someone is literally in there with her:) perhaps getting soaked by her:) love you and holding on to each post!

  2. So glad you are seeing some results!!! I can totally see her running away saying you guys are nuts! The above post about you getting in the tub is a good idea–you know as well as I do-Zoey loves goofy stuff so maybe that would work–holding tons of positve thoughts that this gets better for all of you and good luck with the baths this weekend!

  3. Zoey, you are amazing. Caroline just shared this blog with us and I am so in awe of all of you; most especially Mavis Dracula. I am on the edge of the couch awaiting your next post. Love you. What great parents you are.

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