As you all know, Jackson has Common Variable Immunodeficiency. This disorder is a challenge that Jackson will battle all his life. He has chronic sinus infections, asthma and allergies. Because his immune system is missing parts, he catches everything going around. The treatment is IVIG or Sub-q IG. We switched to Sub-q about three months ago to raise his levels. (I'm playing nurse and getting better each time!) We will have blood drawn on our next visit and are hoping for higher levels than with IVIG.
About 14 months ago, Jackson developed a cough and it has not gone away. He had a sinus surgery in May and his Asthma is under control. So, Dr. Herrscher (our immunologist) decided to start checking things off the list of possibilities. We visited with the GI doctor and decided Jackson needed a scope and ph probe study. Monday was the big day. Jackson has had this same scope and probe once before when he was little. The doctor was looking to see if he was having an allergic reaction to his own drainage or if he was refluxing. He took pics of the throat and inserted a ph probe. The probe goes in the nose and down the back of the throat with a tiny computer chip. The tube is attached to small computer that tests the level of acid. It was not a fun 24 hrs! He was sore, could hardly eat or drink and was sniffing the tube back in all day :( This just happened to be the same day that his sub-q treatment was due. How unlucky! These are some of the saddest pictures :(
UPDATE: We heard back from the GI doctor and Jackson got an all clear. He said that Jackson had a huge patch of thick, yellow mucus in the back of his throat. So, we have made an appointment with our wonderful ENT, Dr. Coffey, for a CAT scan. She has put us on a three week round of antibiotics. It is the best of times, it is the worst of times, but Jackson keeps going! He is truly a gift from God. He told Nana and I that he was glad that we didn't have to have the probe because it hurt and he didn't want us to hurt-TALK ABOUT MELT YOUR HEART AND WATER YOUR EYES!!!
5 comments:
Jackson, you are my light and delight. Also, your mommy ain't too bad either. Have a wonderful, boo day!...love, nana
That's our little trooper! Have fun trick or treating! XOXOX~
Love,
NayNay & Lily
Bless his little heart! When he said that he didn't want ya'll to hurt made me tear up! I will definately be praying for him. Please keep me posted!
WOW!! That is no fun! I am glad to hear the dr. said he was all clear. Tessa had to have the scope and ph probe done this month as well, so I totally understand that it was no fun. I hope his levels get better!
How are things for you this year? How is your class?
What a trooper as I am tearing up reading this post...what a super couragous kiddo you have!!!
Love,
Sarah A
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