We had a pretty rough night last night with the two babies in one room waking each other up. I think our hosts also had a rough night, as some of them still hadn’t gotten up by the time we left the house. 🙁
We arrived at NJH at 8:30 and checked in. We saw a few other kids doing food challenges, and you could hardly tell they had eczema. A nurse did his vitals and we got our room. It’s a nice room with two beds, a comfy rocker/recliner and small fridge. We met with doctor Dutmer first, who did our intake. We went over all of Titus’ history with him. He is a young doctor, and was nice. We also mentioned our concern with Titus’ breathing, that it might be asthma, so they will do some tests for that. They will also test to see if they can find out why he sometimes has a gag reflex with certain foods. While we talked with the Dr, Titus discovered the hospital bed controls and was having a blast raising and lowering the bed he was sitting on.
Next our nurse came in and we went over a lot of the same history. It would be nice if they shared notes more. She also did some swabs of his skin and nose to culture and test. She gave us our schedule for the day which included meeting Dr. B and doing two baths /wet wraps in the late afternoon. A child development specialist came in and gave Titus a bag of brand new bag of toys and books, a bag of bath toys, and a blanket. He enjoyed the toys and exploring the room. From 11-4 we really didn’t have anything to do besides sit in the room. Kind of weird, but I guess the doctors have lots of kids to see.
Titus gets to order food from the kitchen downstairs, and so does mom since she is nursing. I was surprised how much of Titus’ diet they were able to accommodate. They have fresh fruit, steamed veggies, beef, chicken, tilapia, salmon, and apple juice. They were even able to get a sweet potato when I requested it. We have had a few issues with the food here, though… First, Mariya’s tilapia had pepper in it, and we think it was cooked in olive oil. Neither one of these are safe for Titus. She did eat it, but we think we noticed a flare later in the day. 🙁 Second, the food isn’t organic and the beef isn’t grass fed, both of which we do at home. Third, Mariya had some carrot sticks this evening and she smelled onion on them, which could cause a flare for Titus. She stopped eating them once she realized it. Please pray with us that either the kitchen does better, or we find another way to get food for Mariya and Titus. It is hard to cook our own food when we are here at the hospital all day.
There are snacks in the common area that Linda and I can eat. Things like cereal, fruit, juice, bagels, milk, etc. there is also a health food store across the street, so Linda went there and got us some food for dinner.
Dr. B came and visited us around 4. He took a look at Titus, and verified that it is atopic dermatitis. Both doctors are pretty confident they can help us. A lot of things we are hearing are things we have read from other people’ stories about NJH.
We explained to our nurse how we had been doing wet wraps, and she was like, “wow, you guys are good – who taught you how to do this?” 🙂 Again, it is from reading other stories. They have prescribed some slightly stronger creams than what we have been using, with the hope that it will clear up and we can do allergy testing and back off the creams. They are pretty conservative here, but they prefer to get the fire out quickly and then maintain the skin, rather than use weak creams and continually battle with it. In the long run, their method should use less medications. Our first goal while being here is to clear his skin and get him sleeping.
After the first wet wrap, Titus skin looked a lot better, but one hour later when we gave him the second bath, his skin looked bad again. This is why we are concerned about the food.
The doctors want to monitor Titus the first night to see how he does, so I (Matthew) am spending the night with him in the room. After his second bath, we had our bedtime Bible time, and then we skyped with big sister Faith and grandpa and grandma. Titus fell asleep on my lap, and I was able to lay him down in the bed. Now I am sitting here writing while he sleeps.
Thank you for all your prayers and support.