We had a pretty good night. As I said yesterday we did not get into the Ronald McDonald House. They were full, but helped make a reservation that was MUCH cheaper than anything I could find on my own within a $10 cab ride distance of the hospital. As you can see from the picture we ended up right in the heart of Philadelphia. We are in an Embassy Suites in city center that is right next door to an 80-90 floor sky scraper. Our little 23 floor hotel looks like a flee sitting next to a cat when comparing the size to this building in the background. We are on the 7th floor and Caden absolutely loves the balcony. I was just thinking last night that you would be lucky to get Riley to even look out the window from the other side of this hotel room, but not Cadan. The child has almost no fears at this point in his life.
Caden is still sleeping at 8:46. It was very difficult to get him settled down last night. He kept wanting to go bye-bye. He was noticeable nervous with being in a strange place. He would not let me get more than five feet way from him. The hotel room actually has the bed in a separate room so I was able to sneak out and get a shower, pack, and write this post while Caden gets a little extra rest. He went to bed with a little bit of a fever and then woke up at 5:30 with a fever again. I am wondering if this is not his nerves. We have seen Caden run a fever every single time we have traveled in the past. Whether it is to Columbia to the zoo, to Atlanta to visit Grandma and Grandpa, or to the mountains to pick apples, he has run a fever for what seems to be no particular reason.
Anyway, I will wrap it up with a short note about our orthopedics visit. I am not going into much detail because Sherry and I still need to talk through it and she actually wants to help write the post on this subject. The bottom line is that we got some questions answered, but left the meeting with just about as many new questions. We are still headed for a back surgery in the near future. Sherry was able to join the entire meeting with the orthopedics surgeon by conference call. We ended up with five doctors, surgeons, and a nurse practitioner in the room yesterday. The same happened in genetics. We continue to be told that the presentations (diagnosis list) that we are dealing with is one of the most complex combinations that most folks have seen in a 22q11.2 case. This complexity is at the heart of our struggle to make the best choices concerning Caden’s health and future.
We still have a chance to see ENT today. Please keep us in your prayers. We plan to go hang out at the hospital for the rest of the morning to see if we can jump in the place of a no-show in ENT or another clinic.