Raul recently spent six days in the hospital. He was admitted due to infection in his legs and excess bleeding from one of his wounds. He also had a bad virus, which turned out to be Adenovirus. While there they looked into whether he may actually have a deeper infection in his legs. He had xrays and MRIs of both legs, and while there were some abnormalities, they determined that he did not have bone infection. He does have extensive soft tissue damage, muscle wasting, and oesopenia though. He ended up getting high fevers at the end of his stay causing them to do a few more tests, but they determined it was just from the virus. Luckily he was able to be discharged to finish out his course of strong oral antibiotics for his infections at home. It is hard for him to be in the hospital as he has to be in isolation, and this time his room was right next to the playroom so he knew there was fun he was not able to take part in.
They also did immunology testing, and we will follow up outpatient with an immunology doctor. He is also starting some supplements, as some of his vitamin levels were quite low, which is common with severe EB. Hopefully when his levels rise he will have a bit of increased wound healing.
Raul is looking forward to going back to school, but unfortunately is still having viral symptoms that are keeping him home. I am sure he will be very happy once he is better and can go back!
Having his hair washed
In recovery after his MRIs
Sleeping with his bulldozer
Playing on the window bed
