A trip to the city

Last Thursday Drew had an immunology appointment at UCSF. When he was born there wasn't a pediatric immunologist in Sacramento that we could see. I'm still not sure if there is one now, but we've been making the trip into the city every six months since he was born to see Dr. W, and we have become a bit attached to her. She knows a lot about kids with 22q and even though she isn't always the most positive, I feel I can trust her when she says something.

Normally Dan would go with me to this appointment, but he had already missed two days of work this week because of our vacation, so he couldn't take any more time off. I had a friend who offered to take Ava for me, but I had to weigh my options: leave Ava behind and have a much easier time at the doctor's office, but give up using the carpool lane, or bring her with me and endure hellish sibling rivalry during the 2 hour appointment and blood draw, but speed past people on the way home. Hmm. It was a hard decision, until my friend Katie offered to come with me! God bless her, this is her second time accompanying me into SF with her little girl Chloe. It makes the drive go by much faster if you have a friend to talk to!

We decided to make a day of it and take the kids to the San Francisco Zoo before Drew's appointment at one. The drive there was a breeze, the kids loved watching Mickey Mouse Clubhouse and we made it to the zoo in just under two hours. We didn't have a lot of time to walk around, but we did get to see everything we wanted to and we were very impressed with the exhibits and how uncrowded it was. Katie said we could make it a yearly tradition, so next year we plan to leave a little earlier and have more time at the zoo.

Us with the baby giraffes

Baby Gorilla

My cutie pies with the penguins

Chloe, Ava and Drew on the grizzly

Then we packed everyone up and headed to UCSF. It was only about 15 minutes from the zoo, but parking is always difficult there! Once again I was grateful that Katie was there to help me back into a space. Last time I was at UCSF I could not get out of the spot by myself and had to wait for these two ladies to help guide me out. Katie took Ava and Chloe to the food court while I took Drew to his appointment.

The appointment went well and after we talked about how Drew's been doing for the past year, Dr. W told me that Drew could get his live virus vaccines. I was so excited! I've been hoping and praying that he could get his MMR and chickenpox vaccines because I'm so nervous about him starting school and being exposed to kids who choose not to vaccinate. Normally Drew gets a blood test after each immunology appointment to check his t-cells, but this time the doctor said we could skip it and just do it next year. I was practically in tears, he can get his vaccines and no blood test!

Drew getting his bp checked

I was so excited we just hightailed it out of there. We were trying to get home in time for soccer practice at 5:30 (but it was not meant to be). So we're driving home and as I get onto the bay bridge I get a phone call from the doctor's office. Uh oh. They made a mistake and were looking at Drew's labs from Stanford (which we think were not good results) and when they looked at his most recent labs at UCSF they saw his levels were not high enough. We have to get another blood test and wait and see what the results are. Ugh. I was so bummed and I felt so stupid. I should have asked more questions, I should have known that was too good to be true. So they are going to send us the lab request and we'll have the test done out here. It'll probably be a week or two before we have the results, and realistically, he probably won't have high enough levels to get those vaccines.

The drive home was pretty awful too, it took nearly 3 and a half hours in ugly traffic. But we did get to use the carpool lane. The kids did fairly well, but we ran out of snacks and even movies couldn't keep them quiet for the long car ride. Drew fell asleep in the car, but Ava and Chloe (who both still take naps) stayed awake the whole time! Silly kids.

Immunology

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.

Immunology Update

Drew visited the immunologist at UCSF last week. The appointments don't seem to be very worthwhile, except for the blood test at the end. We usually talk to a fellow first who asks us a bunch of questions about Drew that they would know the answers to if they read his chart. OK, it is a big chart, but still...Then the "real" doctor comes in with her cohorts and asks the questions again. You'd think she'd get the answers from the first guy. My favorite question is "why are you here today?" Um, because you tell us to come back every 6 months. And we just like to visit the city. Anyway, this time it wasn't even our normal immunologist and we didn't even talk to a fellow, we talked to a medical student! Also, they didn't seem to be able to answer my questions, which is frustrating.

So on to the blood test. Drew screams from the time they tie on the tourniquet until they remove the needle from his arm. I don't know if the phlebotomist is getting better, or he is getting easier, but she got it in one try again this time! Yes! Then he got a sticker and he was fine.

I called and got the results today and his CD3s are 38% and CD4s are 24%. Last time they were 34% and 22% so we are seeing some small increases, which is good. His calcium level is normal and his absolute count for his CD3s was much better than last time. Unfortunately he can't get the live virus vaccines (chickenpox and MMR) until his CD3s are at a minimum of 40% and usually they don't give them until 50%. We'll keep praying for an increase in T-cells!