Today was another busy day, but it was much like yesterday since the focus right now is healing Ava’s skin with the soak and seal process.
We stayed overnight last night so that Ava’s sleep could be monitored, or rather her oxygen saturation and pulse are observed, while she sleeps. This was all fine and normal. She did wake up during the night three times, which is better than her usual. She was also much easier to settle back down. I didn’t have to walk the floor with her while she screamed. I would say it was a much better nights sleep for both of us. The overnight nurse was so kind to do our laundry for us!
After breakfast this morning, her vitals were checked and then came the always enjoyable blood draw. It was tough to find those little veins, but the nurse did and somehow got 6 vials of blood. Ava screamed the whole time, but recovered quickly and we prepared for her first bath of the day.
She still cried through most of this bath, but started to come around near the end. Then she pooped in the tub, so bath time was over! After her bath, we of course did the whole routine of cream and wet wrapping.
We went for a little walk before it was time for parent group discussion. Today’s topic was sleep. It was very interesting to hear about some of the studies that have been done that show just how important quality sleep is. And lots of it. We also got plenty of ideas for getting children to sleep on their own so that everyone can enjoy that quality sleep! I will certainly be using the pointers with all of my children.
After getting unwrapped, it was lunch time. Ava has been eating amazingly well here. We went for another little walk since she has to be out of the wraps for at least an hour before starting all over again.
After another load of laundry (with all the socks and clothing you use after each bath you have to stay on top of it), it was time for Ava’s second bath of the day. Dr. Hauk came to visit just before she got in, then while she was in the tub, Dr. Lansing, Dr. Boguniewicz and a student stopped by. All of the doctors were so pleased with how quickly Ava’s skin has improved. And she finally enjoyed the bath this time around! When we got her out, the nurse wanted to observe me wrapping her head/face since I would be doing it alone tonight.
Next we met with Dr. Darr for the first time. She will help us with the emotional aspects of Ava’s eczema. Scratching has become Ava’s immediate reaction to every situation. She also uses it to soothe herself. Dr. Darr will help us try and break that cycle, the best that she can in a child so young.
After that, it was just about time to leave. Ava was brought some dinner, so she ate a bit before we unwrapped her. We also did a nose wash before we left.
Although I did see a significant decrease in her scratching today, as soon as we got in the car, she started up again. We will keep working on it!
I did her third bath of the day around 7:30 and had her wrapped and ready for bed by 8. She did already wake up, so maybe it won’t be as good of a night’s sleep as last night, but I am hopeful.
More baths tomorrow and I believe a skin test!