Previous: National Jewish Health, Day 7
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!
Surprise! Bella woke up whining about her nose wash. I had to drag her out of bed. We had our morning bath in our room. This is the new plan now that we are pros – ha!
I let her play with the nasal wash in the bathtub last night and again this morning. Last night she had fun squirting water on the ceiling and getting me all wet. This morning she actually put it up to her face and squirted. We are making progress!
Once we got to the hospital she said she wanted to try to do the nasal wash by herself. She actually got one side pretty well. She missed the other side and shot herself in the eye. We all did a happy dance. Normally, we would have let that be enough, but since her nose is so blocked up, we decided she still needed the nurses to give it a good flush. It only took two nurses to hold her and one to squirt. They told me they practiced how to hold her after we left last night. They are amazed at how strong she is.
After the wash, Bella did her Nasacort by herself. This is big progress as she wouldn’t even hold it up to her nose before.
Today we challenged eggs in the form of french toast. She loved it and she passed! This means she is now clear to eat eggs in any form, even though she still tests allergic to them.
We started Prevacid today for her reflux. The doctors reminded me to follow up with an ENT at home. They are very interested in whether or not the large tonsils and adenoids could be contributing to the reflux.
Her skin is still eczema clear. She has developed what looks like pimples up and down her legs. They said it is normal. They don’t know why it happens but they will go away in a couple of weeks. There are two spots that look angry. They have prescribed a topical antibiotic to be applied three times per day to those spots. We are not to cover those spots in our wraps. They need to breath.
We had group therapy again today. There was a new dad that just came in this morning. It was interesting to hear his perspective. Sometimes I forget that helplessly watching your child suffer is just as hard on the dad as it is the mom. I noticed on another day that one of the dads was more worried about his totally stressed out wife than he was his kid. I am thankful for and miss my strong and supportive husband. I can’t wait for him to see the progress we’ve made here.
After group, Bella and I introduced ourselves to the newest Atopic Dermatitis patient, a 7 month old girl. It was so fun to show off Bella’s new skin and encourage her parents. I’m so happy they found this place while their baby is young.
The psychologist spent 30 minutes alone with Bella today. She let Bella lead her in play. She said Bella spent the whole time caring for a stuffed dog. Lots of notes were taken and several doses of medicine and nose washes were administered. The doctor was pleased with Bella’s progress.
As we left today, we realized that this was our last time to see the Monday, Tuesday, Wednesday staff. We said goodbye to our favorite nurse, Beth Ann. She has been our biggest cheerleader. She has been working here for over 25 years. She was the one that took care of us the first few rough days and almost completely healed her skin. She has known when to be gentle and when to be assertive with Bella. She has been a wealth of knowledge. In fact, she is the one that taught the one hour lecture on Atopic Dermatitis. I hugged her and cried. She has no idea how she has changed our life.
After we left the hospital we met up with Bella’s little angel, the local girl who helped us so much last week. They took us up to red rocks. Her mom is really into archaeology so it was like having a private tour.
After playing in the red rocks we took the girls to Red Robin for dinner. We were pretty comical. Bella asked for spaghetti. I asked if they had gluten-free pasta. After the waitress went to the kitchen to check (no, they don’t) I remembered Bella can have wheat now! Oh, but not cheese. Does the sauce have cheese in it? She went to check and said no. So I ordered spaghetti for Bella. When she brought the food, the spaghetti had cheese on top! She felt so bad and brought her a new one right away.
Our sweet friend is extremely allergic to egg. After going back and forth with the waitress again we decided a grilled chicken sandwich and apple slices would be safest for her.
We were enjoying dinner when we both looked up and realized our sweet little friend was breaking out in hives. Can you believe neither one of us had any Benadryl? We couldn’t use it while at NJH because of allergy testing. We both had epi-pens, but we were hoping not to use them. So, I grabbed the keys to her car and ran as fast as I could to a local Target. Thankfully, the reaction was minor and she was fine.
We’ve really enjoyed getting to know our new friends. Saying goodbye was really hard. We’ll keep in touch on Facebook, but it won’t be the same. We will miss them so much!
You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.