National Jewish Health, Day 2

Denver Zoo - The lighting is bad, so it looks like her skin is clear. It's a little better, but not clear.

Previous: National Jewish Health, Day 1

If you are new here, you can find all of the posts in our Overcoming Eczema, Food Allergies and Night Terrors series here to get caught up!

We spent Monday night at the hospital. Bella had a bath/wrap before bed.  She no longer needs her face/head wrapped.  They gave her some medicine (Chloral Hydrate) to help her sleep.  She woke up around 1:00 AM local time.  She sat up and started pulling her wet wraps off and scratching.  The nurse and I took the wet wraps off, covered her in vanicream and put dry pjs back on her.  She was scratching at her hands and forehead.  So, just like at home, I sat with her and tried to stop the scratching while rubbing her little itchy spots.  It took about an hour until she stopped scratching and settled into a deep sleep.  I went back to sleep.  The nurse had the monitor on in the room and said Bella screamed around 5:00 AM and settled back into sleep on her own.

I’m not sure what time we woke up.  Bella was anxious and crying again.  She wanted to go home.  So we went looking to see if our little friend was there.  She had just arrived and was checking in.  I asked if they could have their morning vital signs taken together.  Bella watched very closely as our friend had her chest listened to and temperature, pulse and blood pressure taken.  Then with all the courage she could muster, Bella held out her little finger and arm for the nurses. I was so proud of her!

Unfortunately we had to follow that with blood work. They had used numbing cream and really tried to distract her.  It just didn’t work.  They had to wrap her up in a blanket like a burrito.  It took four nurses to get the blood.  The good news is they don’t anticipate having to take blood again.

Did I mention she has a sticker chart?  The blood draw earned her enough stickers for a trip to the prize closet.  She picked out a hair set for her dolls.  It included a couple of curling irons and clips.  It almost made her forget what she had been through.

We went straight from the prize closet to the bathtub.  She will only need two baths/wraps today, one in the morning and one at bedtime.  Baths and wraps are the cornerstone to the treatment plan here, but most kids are terrified of them.  Kids with severe eczema usually have open wounds, and when water hits them it stings.  Have you ever tried to give a cat a bath?  That’s what it looks like when you try to give a kid with open wounds a bath. You know it hurts, but you also know they need it.

Even when Bella doesn’t have open wounds she is terrified of water. It takes a lot of coaxing to get her in the tub.  It’s a very slow process of dipping a toe to see if it hurts, then a foot, then two, then sitting on the knees, then on the bottom, then hands.  Usually by the end of the bath she is lying down and “swimming.”  She usually is having so much fun she doesn’t want to get out.

Even though she had two baths that didn’t sting the day before, Bella was afraid to get in the tub.  She was sure the little spot in her arm where they took the blood would sting. There was no rationalizing.  The nurse and I had to hold her in the tub for the full 20 minutes while she kicked and screamed bloody murder.  When it was all done, the nurse and I looked like we had been in the bath.

Once in her wraps, she snuggled up in her bed and watched some Disney.  The psychologist showed up after that.  There was a one hour interview.  I don’t know that she said anything profound, but it was just so refreshing that she got it.  Almost everything Bella does is normal for kids with eczema.  She said she would have people work with Bella.  She would let her play with medical equipment.  One thing she did note is that waking to scratch is normal for these kids, but night terrors are not.  She was afraid the night terrors were a separate anxiety issue as my doctor at home was beginning to suspect. Did I mention my pediatrician said if the medicine we are currently taking (clonodine) didn’t help the night terrors, the next level of medication is Prozac?  Not what you want to hear about your four year old.  We have an appointment with a sleep doctor tomorrow.  The psychologist said she would know what to do about the night terrors.

Then there was an allergy scratch test. First a child life specialist went over everything and let Isabella play with tools just like the ones that were going to be used in the test.  All things considered, she did pretty well.  Peanut, hazelnut and cashew were really strong reactions.  Interestingly, there was no reaction for wheat, and egg and dairy were close to nothing. I can’t wait to see how the doctors interpret that in the morning.

Normally the kids spend the first night in the hospital and the rest of the program is outpatient.  Typically the bedtime bath and wraps are done in the hotel.  Because morning bath time was so crazy, they decided we must do the bedtime bath and wraps at the hospital.  Then I would take her back to the House and put her straight to bed.

Because we had to come back at night, they gave us the late afternoon off.  We went to the local zoo (admission is free for hospital patients).  We had dinner at the Ronald McDonald House and skyped the family before heading back to the hospital.  This time Bella did really well with the bath and wraps.  They gave her some sleeping medicine (chloral hydrate), and I took her back to our room.

Next: National Jewish Health, Day 3

You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.

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One Response to “National Jewish Health, Day 2”

  1. daisy says:

    I’m so sorry y’all are having to go through so much. It means so much when others “get” what is going on. Sending you healing energy. Continued blessings…