First off, Happy Easter everyone. I hope everyone had a good Holiday.
The meeting occurred today and we found out the following: The doctors are still looking into his immune issues and the best way to treat them. There has never been a case as far as Dr. Markert is aware of that has presented this way. They believe that he 'may' have a Thymus. If so, he would not be a candidate for the Thymus Transplant anymore. So where do we go from there....she has contacted the NIH(National Institute of Health) and they are also working with her to decipher his blood work and biopsies. She is very dedicated to his case and continues to try to figure out what would be the best 'plan' for him to help his immune system. She is having her pathologists look at Caleb's biopsy slides to see what they can make of that. As soon as we get any updates from her I will let everyone know.
ALSO, we have gotten the go ahead from Dr. Markert to do Caleb's cleft lip and nose repair, not the palate yet. In addition, they will be able to repair his hernia at the same time. However, all of this has to be okayed by cardiology as Caleb has one significant ASD and one smaller ASD and we do not know how that will effect the estimated 4-5 hours under general anesthesia. The heart has to be reevaluated also to see which way the cardiologist wants to fix the holes, CATH Lab vs. open heart. Of course we are all hoping they can be fixed in the CATH Lab. So we are very excited that he will be able to have his much needed surgeries as he is having some issues with his mouthpiece as the Cyclosporine is making his gums swell and he is having feeding issues that hopefully can be somewhat helped by the repair. However, there may be underlying feeding issues related to CHARGE.
After Caleb goes through these surgeries and if everything goes okay, if the docs give their approval we could possibly go home for awhile until they figure out how to treat his immune system. Again, they are saying they are very stumped with Caleb's immune issues and have not seen it before. So at least we can get his surgeries done while we are waiting to see what the next course of action is.
I have included a video montage from Caleb's first Easter. Enjoy.
7 comments:
He looks sooooo good! Love him all dressed up for Easter! :) Very cute! Glad you have been able to figure out the videos, very fun to see him in action! Plus how cute are you two with him! And he and his Daddy, could they look any more alike??? :)
Thanks for the update on the medical front...how confusing!
Happy Easter!!! He is so precious!! I could watch him all day!! You are so good with the video! God Bless you all. At least there is so positive news about the surgeries! Love you all & kisses to Caleb!!
Love- Aunt Jen, Uncle Andy & Haleigh
Looks like the little man had a great Easter!!
Love you all!
Jess :)
Looks like a wonderful Easter and he is just so adorable in his outfit!! I love his smile he just lights up a room.
I will continue to have you all in my thoughts and prayers.
Hugs,
Crystal and Eva
That video is soooo GOOD!!! He is so darn cute...you guys make a great family!
I think about you guys daily and wish you the best!
Love
Jenny, Darin and Keira O'Dell from Huntington WV
Caleb is such a happy little fellow! He is an inspiration to me; he seems to always be smiling and happy and that speaks volumns about how loving his parents are. I am praying for your family.
well wonder if soem bamugoblulan would help that always helped me i used to have a low imunity was coz i allways aspirated charge stuff again lol
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