Tuesday, March 18, 2008

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.

11 comments:

Amber said...

Yeah Drew! Andrea, you are so awesome with him and you better believe I'm taking notes with how to handle this stuff with Logan the older he's getting. I'm glad it went well for you guys today!

Kate said...

haha i LOVE that drew said that he wanted ava to get a shot! i also like it when you get validation so that you don't feel like some kind of purelling maniac.

Grandma said...

What a brave little guy! Be sure to look for that t-rex/car on your porch today, I had it overnighted so he would still associate it with being such a brave boy. If he ends up having to have blood drawn again this week, please tell him the same thing and then let me know what he wants. It really makes me feel like I'm helping him through it in my small way to be able to distract him from so far away. And I know its easier for you when he's distracted. Thanks for letting me do it, you really are giving me a gift! Love, Mom

Lexi said...

Drew is such a darling little boy! I love that he said, "that parts over". Like phew! So cute!!! Anyhow seems like you had an overall pretty good day considering. Praying for you guys always. And you should be proud it's not easy keeping kids healthy!!!

Katie Scott said...

I'm so glad that the appointment went well. I love Drew's little comments that he makes! He has such a great personality! Keep up the awesome job you're doing with your kids, Andrea!!

Izabell said...

way to go drew!! and way to go you guys! you should feel very proud you are doing an amazing job on all accounts! I am definitely in awe of your grace! ~wyndi

Kathy said...

Andrea...
The places we travel for our kids!!!
Glad you had a good appt...and blood on the first try...she's awesome!!!
I'm with you on the germaphobe world...my poor older boys sanitize so often that it cracks their hands!
Can't wait to see when they schedule surgery.
I'll try to catch you before I leave town..but, we'll be back in a few months if I miss you on this trip.
I hope you know how awesome you are...keeping an immune compromised kiddo so healthy...AWESOME job!!!
Take care,
Kathy

Quayle Covey Blog said...

Can you teach me your germ tricks please? Maybe you could hold a germ class. :) I'm glad your trip went so well. We're looking forward to hanging out again sooN!

Isabelle's Mommy said...

What a blessing to have a good appointment all the way around. Drew is so brave and he has a great Mommy for taking good care of him! And how smart of him to want his sister to take one for the team too!! That totally cracked me up!!

Vanessa said...

Our poor kids have to go through so much. I try not to think about how it will be when she is older but I got some good tips from you today. Thanks!

That IS really good that Drew hasn't been very sick even with such a low T-cell count. You know what...I have no idea what Arianna's percentage is. I'll have to ask the doc when they call with the results. This is actually the one area I get totally lost in.

Oh and the Ava thing...priceless!

Anonymous said...

I absolutely hate having my blood drawn. I think the next time I go I need to take Drew with me. He is WAY braver than I am