Previous: National Jewish Health, Day 3
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!
Last night was the first night we did the baths and wraps on our own in our room at the Ronald McDonald House. We got it done, but it takes so long. I don’t start the 15-20 minute timer until Bella is wet from head to toe. As I said before, she has to ease into the tub and then slowly get her face and back wet. Our 15 minute bath easily becomes half an hour.
Last night I gave her the smaller dose of Chloral Hydrate as the doctors ordered. It didn’t knock her out like it has before. She had a hard time relaxing. After about an hour she started getting itchy under the wraps. This hasn’t happened before. She kept trying to pull the wet socks off of her hands and feet. I fought her for a half an hour and then decided she would go to sleep easier without them. We learned in the lecture yesterday that 2 hours is the ideal time to keep the wraps on, but 1 hour is enough if you are pressed for time. It had been an hour and a half, so we took the wraps off and put vanicream and dry socks back on. She fell asleep 10-15 minutes later and slept through the night. Two nights in a row of sleeping through the night! Whoot!
We had a normal morning of vitals, bath and wraps. We also met with a dietitian. She asked about our normal diet. She is concerned that Bella is not getting enough complex carbohydrates and calcium. She recommended we offer milk substitute at every meal and consider a supplement. She pointed out that Silk does not fortify their coconut milk with a significant amount of calcium.
The doctors reviewed the previous day’s allergy test with me. Bella’s environmental allergies are pretty limited. She is allergic to a certain kind of grass, dogs and cats. The puddle test for the fresh milk and scrambled eggs were positive, but the doctors feel comfortable challenging these as well. We will start with the least likely to cause a reaction while her skin is still healing.
Then we had group therapy for parents where we discussed how to deal with chronic illness in school. 504 plans were discussed in depth. Creative ideas were shared. One that I really liked was instead of having a peanut free table in the lunchroom, have a peanut table. This way the peanut allergic kid isn’t isolated everyday.
The most exciting part of our day was a wheat challenge. Bella ate an entire piece of wheat bread with no reaction! She is so excited. She keeps telling everyone we see that she can have wheat now.
Today was our sweet friend’s last day. She brought Bella a gift bag full of goodies to help her be brave. It included a pinwheel for breathing exercises, a turtle for bath time and a notebook with a giant pencil to write letters. The notebook had a sweet letter of encouragement written in it. She paid for it with her own money. I had a really hard time holding back my tears. The good news is this sweetheart is a local kid. We exchanged numbers and hope to get together to play before we leave.
This afternoon’s lecture was on asthma. Thankfully, Bella doesn’t have asthma, but 50% of kids with severe eczema develop it at some point. Two of my other children have asthma. Since National Jewish has been the number 1 respiratory hospital for years, I figured I ought to soak up as much knowledge on asthma as I could.
Bella had her nasal flush and we were sent home with an assignment: find almond butter for tomorrows food challenge. The only almond butter I could find includes a cross contamination warning for peanuts and hazelnuts. Since Bella is allergic to both of those nuts, I’m curious to see if they still try it.
There was a bad rainstorm before dinner and the electricity went out at the Ronal McDonald House. Our room has three windows to let the sunlight in, but the bathroom was pitch black. I thought we might have to go back to the hospital for our bedtime bath and wraps. Then I remembered seeing a bath tub filled with glow sticks on Pinterest. I had some glow bracelets in Bella’s carry on bag. We threw a couple in the tub and had a glow in the dark bath! It was so much fun I’m sure we’ll do it again.
You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.