Today we drove to San Francisco for Drew's immunology appointment. We left around 7:15 am and didn't get home until almost 3:30 pm. Thank goodness we all went, so we could at least use the carpool lanes that require 3 people per vehicle. The kids were great on the almost 3 hour trip there and we made it just in time for our appointment at 10.
We saw the fellow first and then the "real" doctor. These appointments are not usually very exciting, the real reason we are there is to do blood work and we won't know the results of that right away. We did talk about the big three-his heart, his immune system, and his development. We've got heart surgery coming up (still no word on the date from Stanford) and the doctor thinks we need to worry about that first. OK, I seem to do that pretty easily. They asked if he's had any infections since we saw them last. I think he's had an ear infection and there was the hospitalization in September that ended up being croup. Overall, he's had a very good year as far as sickness goes. She did say that he is severely immunodeficient. The last time we had his T-cells checked was last June and they were 38%. Normal for his age is 55-65%. Typically they don't give the live virus vaccines (MMR and chickenpox) until the kids reach 50%, but she said 45% might be acceptable. I asked how he could have such low T-cells but be still be so healthy and she said it is because he receives "good care." That made me feel good about myself and she said I should absolutely continue in my "germophobic tendencies" until his T-cells are up and she tells me to stop. So I guess I'll keep wiping down the shopping cart and coating the kids in purell every time they touch any surface in public.
They asked if Drew knows his letters yet. And I was proud to say that he does and all the sounds that they make. The doctor said that although lots of DiGeorge kids have trouble in school he seems like he won't have much trouble. I was glad to hear that! She still would like to have a developmental test done to get an idea of where he is at. She said it would be beneficial for us as his parents and for his preschool teachers. She'd like to do it before his surgery though because she said it can take kids up to a year to recover from surgery to really get an accurate developmental assessment. That makes me sad. Even though I'm sure it's true, I don't like to think that it could take him a full year to get over the trauma of surgery. Poor little guy.
Then we had the blood test. I told Drew right before we got to the appointment that he was going to have a blood test afterwards. He seemed ok with it then, but when we got into our room he said "I want Ava to get a shot." I had to tell him it wasn't her turn, but that he would get M&Ms afterward and grandma would buy him a present for being so brave. When we got to the lab waiting room I kept him distracted with his I Spy book. There were a ton of babies waiting to get their blood drawn! I've never seen it so busy there. So there was a lot of waiting, but I used the time to explain everything that was going to happen. First she would pull up his sleeves and look at his arms, and that part wouldn't hurt. Then she would tie a strap around his arm, and that part wouldn't hurt. Then she would put the needle in, and that part would hurt a little bit, but then it would be over and he could have M&Ms. When it was his turn he walked back to the phlebotomist, who is very good at what she does, but not very kid-friendly. He started to get upset, but he calmed himself down with deep breaths and thinking about what grandma would get him. The phlebotomist is so great, she got blood on the first try and she had to collect four vials! While the needle was in his arm and I was asking him what he wanted from grandma he shouted "I want a dinosaur! I want a T-rex!" and it helped to distract him. Once he got down and knew he was safe he said "That part's over!" and was back to his normal happy self.
So, it was a pretty good appointment. This doctor has not always been so positive, so it was nice to hear that she thought he was doing well. We were also able to do labs for his endocrinology appointment on Friday so we can avoid a second blood draw this week. I'm so proud of my brave boy.