Archive for April 24th, 2012

National Jewish Health, Day 1


Bella's First Airplane Ride. Notice her collar is stretched out from running her hand along it to scratch between her fingers.

If you are new here you might want to read Our Personal Story Part 1 and Part 2 to get you up to date.

After a very long day of traveling Sunday, we arrived safely in Denver and checked into the Ronald McDonald House.  Volunteers had dinner waiting for us when we got there.

Bella slept pretty well for her, only waking 2 or 3 times to scratch.  Amazingly, there were no night terrors.

She normally wakes up in a wonderful mood, but this morning was different.  She didn’t want to get dressed.  She was hungry.  She was too sleepy.  She couldn’t go to the hospital.  She was stalling.

She has really developed some serious anxiety to doctors and medical procedures.  After a few tears, I got her dressed and promised to carry her to the car.

We arrived at the hospital at 8:00 AM.  After filling out some paperwork, a nurse tried to take Bella’s weight, height, temperature and blood pressure.  She was hysterical.  With the nurse standing on the other side of the room, I weighed and measured her.  They postponed getting a temperature and pulse.  When they took them later her pulse was so high they gave up on getting her blood pressure.

Once in her room, nurses and doctors came in and interviewed us.  Bella cried off and on for three hours insisting that she had to leave.  She said the doctors made her belly hurt.

I prayed with her and then on my personal Facebook page I asked my friends to pray for Bella to have peace.  A little bit later, we walked to the kitchen area to get something to drink.  We found a little girl a year or two older than her.  This was her second week here.  She and Bella played together and then some doctors sat down with them.  The doctors asked the other little girl to tell Bella all about her week.  Did anything hurt?  Was everyone nice?  Did she feel better?

Bella’s attitude completely changed.  She walked off with the doctors for a physical exam and was extremely cooperative and cheerful.  I haven’t seen her that way with doctors in a long time.  I am so thankful that God answers prayers.

We were asked to be a part of a study.  I was more than happy to help if it didn’t require anything invasive that would increase my babies anxiety.  It only required some swabs of the skin and some blood work.  They would wait until tomorrow and collect the blood when they collect blood for other things – no extra needles.

There were more interviews, more doctors and more physical exams.

Wet towels keep the whole body moist while soaking in the tub. Water is constantly poured over her and her face is dabbed by a wet washcloth.

 

Bella had two baths followed by wet wraps today.  Wet wraps are used to rescue the skin.  They eliminate inflammation and infection and force moisture into the skin.  We expect to be doing them three times a day for the next three days.

The wet wraps are really simple.  She soaks in a bath for 20 minutes and then gently pats dry.  The flare-ups (currently her whole body except her stomach) are covered with a thick coating of steroid ointments and the other parts are covered with a non steroidal cream called Vanicream.  Then a layer of warm wet pajamas and men’s tube socks over the hands and feet are worn.  A layer of dry sweat clothes and tube socks go on top to keep the child warm.  The face and head are wrapped in wet gauze if needed.  All of this is worn for 2 hours.  Once her skin is completely healed, she will “soak and seal” without the wet wraps.

Next: National Jewish Health, Day 2

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