Today was a long day here in Cincinnati! We got up a little before seven, and started getting ready. We were a bit rushed, but I managed to eat two of my pumpkin muffins from home, get us both dressed, medicines, and pack for the day before we had to get the shuttle! Unfortunately, when we got downstairs they told us they had to record of our shuttle reservation that we made yesterday when we checked in! Then they proceeded to argue it for about 15 minutes before calling a taxi (there was a flight crew taking the shuttle to the airport at that time). The taxi came after 7:50, and I was convinced we were going to miss his first appointment, so was pretty stressed! The taxi driver was very nice, and he got us there about 8:05, so we were still able to have our appointment!
First we went to Same Day Surgery for an anesthesia consultation. They gave Raul some little toys while we waited, but as soon as we got to the room he knew it was a doctors office. He started crying even though they never did anything to him. They took vitals, and then I talked to the anesthesiologist for a while. He was nice, and explained all the precautions they take for EB patients. He did say that he will likely be intubated for the procedures, though. We talked about his anemia, and how he will likely need a transfusion. He said they would draw labs once he was asleep and they got an IV (this later changed).
After that we walked around the hospital a bit, and wandered around the gift shop. Then we sat by the entrance for a while. Raul did NOT like waiting. He cried most of the time we had to wait (about 3 hours). I let him watch some Netflix on my laptop, and we had cars and books, but he just wasn't happy.
Then we had our appointment with Dr. Lucky. She is a dermatologist, and one of the heads of the EB Clinic. She was wonderful! We mostly just talked, as I had sent them photos of his skin yesterday, though we did look at his worse leg. Raul slept through the first part of this appointment, he was just exhausted. She was very encouraging about our care of Raul, and understood the difficulties we face without insurance, and with doctors who are not super familiar with EB. She is a big believer that all those with EB are different, and different things work for everyone. Their suggestions were to cut his leg bandages in a way so they fit better around his ankles, and to make a bleach/water mix in a spray bottle to use when doing bandage changes. They even gave me the recommended amounts for small bottles, which was very helpful!
She also said Raul may be the true test with bandaging. Since we use mostly donated bandages, we have tons of different types that we try, and she thinks that is a good way to find what really works instead of from the beginning only using one thing. We did talk about his hands a little, and they were impressed with how well he uses his hands. They also said/agreed that keeping the thumb separate is the most important for function, and that his thumbs are looking pretty good. I explained to them how crazy he gets with itching and removing his bandages!
We talked about his anemia, and she agreed that it was better to do a CBC today to check his levels, then they will do the rest of the labs they want while he is asleep tomorrow. So we headed to the lab at the other side of the hospital for that. We had to wait a while, but they did a pretty good job with it! Then we finally were able to call the shuttle and head back to the hotel! I tried to get Raul to nap, as I am exhausted too, but apparently his short nap at the hospital was it. So instead I ordered room service, and plan on us going to bed early!
Tomorrow is a slightly later start, but likely an even longer day! I checked out the balloon selection in the gift shop for Raul's birthday, and also brought most of the cards that were sent to him! He got a few early birthday wishes around the hospital today too. Tomorrow he will be wearing the birthday shirt I got from Etsy and his "Birthday Boy" pin to the hospital!