For those reading this blog for the first time who have come over from the story on storify.com, welcome! Please read back through the posts to learn more about Raul! And for my regular blog readers who haven't read the other story, here is the link:
Raul had a short inpatient stay about two weeks ago. We were admitted directly by his pediatrician for IV antibiotics for skin infections, but once we got there they decided to just continue his oral antibiotics. It was a very frustrating experience for multiple reasons, mainly that they did not do what we were admitted for, and their bandaging suggestions. They bandaged him in a way that stuck HORRIBLY, and then said we were to continue their method at home. Sorry, not going to happen. What we were going was working just fine, and not hurting him by sticking and pulling off his skin! They were suggesting products that most EB patients don't do well with over open wounds, so we plan to stick with the better bandages. Especially since that is what was suggested to us out in CO by the EB specialists!
We had a much more positive experience outpatient at Shriner's Hospital. The hospital is amazing, and everyone was so kind. Raul loved the waiting room full of other kids and nice volunteers (and he wasn't nervous as usual, because it doesn't look like a doctor's office waiting room). The bandage change went well, and the doctor said he thinks Raul's wounds are looking better than when he saw him a couple weeks ago. They took pictures of his skin, and measured the areas that are granulated tissue (not actual epithelium left). We may try grafting the areas in the future, but his wounds have too much bacteria in them at this point. We will continue to go every three weeks so they can monitor the wounds, and make suggestions accordingly. Next time, the dermatologist from MGH will go over for his appointment so she can see him without having to take off bandages at a separate appointment. That plan was arranged today at our visit to the pediatric Coordinated Care Clinic.
Overall Raul is doing really well medically. Not many fevers lately, and his skin is looking pretty good (his right leg is the worst right now). We have been using silvadene on the worst areas, and it seems to help. He has gained weight again, and is now just under 24 pounds! The inpatient nutritionist told me that he is at about what would be her target for him at this time! Developmentally he is making progress as well! He now waves for "bye" and "hi", claps, signs more, shakes his head no, is happy to practice going from sitting to standing, and loves sitting up. He can almost sit up on his own now, but still just falls backward to lie back down, so we have to put pillows behind him. Instead of turning to the side to sit up like PT wanted him to do in CO, he has decided that it is easier to just do a sit up. He definitely has strong stomach muscles, and only needs a little help at this point to do it! We also have him sit on our laps with his feet flat on the floor, then he uses our arms to help push himself to standing! His legs are strong, but he has very little balance, so he needs a good amount of help with that. Overall, he is just super playful and funny, and he keeps us laughing every day!