Ava and I had a very full day today! It is 8:30 and she has just fallen asleep. We are staying at the hospital tonight so that her sleep can be monitored. I don’t want to get behind in posting about our experience, so before I get to sleep, I want to try and document what happened today.
We arrived at 8:00am to check-in. We went right to our room and one of the doctors, Dr. Lanser, came in immediately! He asked all the usual questions: when her eczema started, how we have treated it thus far, what doctors we have seen, what her eating and sleeping habits are…He made me feel so relieved right off the bat because he told me that it is not at all uncommon with eczema to see such wild fluctuation from day to day, or to have a difficult time pin pointing the triggers. I no longer feel like I had just given up and wasn’t doing enough for Ava. Then we discussed some of what we can expect while we are here. Baths and wrapping are number one. Ava will get 3 baths a day to start, decreasing when she is ready. They will also do some blood work and then when her skin is clear, we can start trying to identify the triggers. He also talked about testing for a gene mutation (filaggrin) because eczema does run in my family, with my mother still suffering to this day. Depending on the results, we might know more about how long Ava could suffer.
Next, our nurse for the day came in along with the child life specialist. She brought Ava a bag full of bath toys, some books and her favorite thing thus far, a big bouncy ball. The nurse took us down to the triage room where we did all of Ava vitals. Then Dr. Lanser and Dr. Hauck examined Ava while the nurse took some cultures from Ava’s skin and nose. She was scratching the whole time, so the doctors wanted to get her in to the bath ASAP.
We started the first bath around 11:45. Ideally, Ava would be in the water for 20 minutes. I have had trouble with this at home because she just doesn’t like taking a bath. This is to be expected when her skin is in it’s current condition. She screamed for the entire bath, but the nurse and I held her in for the whole 20 minutes. Then came the tricky part. As quickly as possible, a very low dose steroid is applied to sensitive areas and a slightly stronger steroid to the rest of the body. Then wet tube socks are put on the arms and then wet, one-piece, footie pajamas over that. This is followed by dry socks on the arms and legs, followed by a dry pair of sweatpants and a sweatshirt. Next, the head and face are wrapped with a very long, wide piece of wet gauze. This is held in place by a piece of stretchy mesh, with a hole cut out for her face. Here is what she looked like when we were done:
She ate a little bit of lunch and shortly after, fell sound asleep. It was the longest nap she has taken in quite a while.
The wraps are to be kept on for two hours. Ava slept a little longer than that, so we removed them when she woke up around 2:30.
Dr. B (he has a very long, difficult name and I can’t find the paper right now to look it up) came in next. He travels all over the country to talk about the program here. He expressed the disappointment that many others feel because there has yet to be something similar to the program here started in other locations. Again, I felt so relieved because he told me that I was right not to put Ava on oral steroids as one doctor back home had suggested. They have found that although it might give quick relief (as many doctors and parents are hoping for) once the oral steroid is stopped, the eczema comes back, usually worse than before. All the doctors here have reassured me that their goal is to manage Ava’s eczema without steroids. We have to use them to calm the skin, but with the proper routine, we will hopefully not have to use them long term. Dr. B and I also talked about another frustration that we both share – busy doctors that don’t really take the time to examine the patient and just throw a prescription at the parents with out really explaining anything or ever coming up with a treatment plan.
After Dr. B left, Ava had a photo shoot! A professional photographer comes in to photograph each patient when they first arrive and also before they leave. Ava loved it! She laid so still on the bed, smiling and saying cheese, while the woman took probably 50 shots. She said she has never had such an easy subject.
After that, we had a little time to play.
After dinner, it was time for another bath. At first, she seemed excited when we went in to the bathroom. I got her undressed and she was waiting by the tub.
As soon as we turned the water on, she literally ran out of the bathroom and shut the door! It was hysterical. So, she wasn’t excited for the bath (yet). We went through the same routine as before, except we left one foot uncovered so that she could be attached to the monitor tonight.
All the doctors agreed today that Ava is certainly a severe case, but they have no doubts that they can help her. We will see what tomorrow brings. Thank you for reading!