Well...it's good news and BAD news.
The good news is that his little body is making some antibodies. His tests for the live vaccines show that he is making antibodies to fight them (but, we're not giving them yet).
NOW...the bad news. Isaac's t-cells are WAY TOO LOW! With DiGeorge kids...we know that they will be low...but, his are SO low that Dr. McKnight is emailing his records to DUKE to see if he qualifies for a THYMUS TRANSPLANT! WHAT?!?!? They've only done about 60-70 of these (from what I've researched)...with a 58% success rate....and Duke is the ONLY hospital in the country doing these transplants. They take a thymus gland from a live donor (another child having heart surgery) and transplant it in Isaac's leg. It requires a 3-4 month hospital stay (because...it is a transplant and you still have to be super careful with rejection and infections). Isaac's CD4 (tcells) were 433...and his CD8(tcells) were 58...Dr. McKnight said that if the CD4 number had been in the 300s and the CD8 number below 50, then he'd have us on a plane this week to Duke. BUT....although his numbers stink...he is doing relatively well. NOW...if Isaac had some bacterial infection that we didn't know about when these labs were pulled, they could have affected the numbers a little. So, he gave me the lab slip to get more labs pulled while we're at Stanford. SO...YES...he's still clear for cleft palate surgery. (and yes...he's consider the bad DiGeorge...complete...YUCK!)
Now...we just wait for Duke to see what we should do.....
at least there is a plan. If he gets the transplant, and it works, they see an increase amount of t-cells within 6months.
I know that none of the doctors have a crystal ball and can tell me how long Isaac will be around...but, I asked Dr. McKnight..."With these numbers as they are now. If he got pneumonia next week...would he die?" and he said, "yes". That's how low his tcells are, that's how weak his little body is and if he's dealt with an infection that large, he will not be able to handle it.
SO...if you read this and you like to visit us...you MUST stay away if you're sick. I don't think we're at the point where I have to put a mask on him and gloves on him (but, don't think I haven't thought about it). I think we'll just keep doing what we've been doing...and just be a little more mindful about things. AND....I'll keep working with him on all the things, eating, sitting up, standing....because I just know that Isaac will be fine. This transplant doesn't scare me...it actually gives me more hope that there is an alternative for him (that there wasn't just 10 years ago)....
SO...think about this. We just happen to move to the west coast, have Isaac...with his crazy heart...and the man who created the surgery that could save his life is on the west coast. NOW...he might need this transplant...and it just happens to be ONE hour away from my Mom's house...and my favorite college basketball team..... coincidence?? I think not....I think someone's hand is helping us through all of this...and I'm so thankful.
We'll just keep doing our daily routine. Which, by the way, Isaac is still off his O2 during the days...and almost a week with no throwing up!!! He's such a little fighter!!!
Thursday, May 29, 2008
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10 comments:
Kathy,
This sounds so scary, even to a hardened veteran like me ;)
You're on my mind, I wish there was something I could say or do to help.
Kathy...you sound so great with all this news. It is terrifying still today reading this even though we spoke about it yesterday. I am hugging you tight right now...and you are so right...there is someone looking out for you for sure! That Isaac is such a strong little boy!
Lots of love,
Samantha
Thanks for an update. I was wondering what was going on. I'll have to do some research on that. So, I myself will understand. Isaac has a lot of surprises for us, doesn't he? And all he does is smile uh? We love you Isaac, tell your mama that your okay. Abby
Hey, where is my Happy Birthday post??
It's great to hear that Isaac is going to be fine. The doctors at Duke fixed me so they will do a good job with Isaac.
See you tomorrow.
Kathy,
You are amazing! You have such a gift for seeing the positive side of things. And you are right, His hand is in everything.
We are praying for you and Isaac always.
Hey you amazing mama, your little Isaac is such a fighter. Like I said in an earlier post, he was obviously put on this earth for a good reason. He has a lot to do.
You have a great attitude and you're such an inspiration to me. I imagine this is all pretty scary stuff to hear, but keep reminding yourself that Isaac is in GOOD hands (meaning, GOD and all of those wonderful doctors/surgeons).
We'll just pray that those numbers were wrong and this next blood draw will reveal PERFECT numbers!
xoxoxoxoxox
You have the most positive attitude Kathy-Isaac is so lucky to have a mama like you!! Thank God for Duke and thymus transplants!! Isaac-you are such a little miracle and this will be one more hurdle that you will overcome!!
Lots of prayers and love,
The Domanico's
Thymus transplant ?????
Who would have ever thought.
I'm not even sure I knew I HAD a thymus.
YEAHHH for Duke. It's about time for some east coast visits.
I remember when I first found out about Arianna having DiGeorge Syndrome I did ALOT of research on the thymus transplant. I remember being scared at first but just like you I became hopeful that at least there was a treatment. It was very experimental in the eyes of physicians but I knew if Arianna got to that point one day than, bless God, there was something to be done.
Isaac is one amazing little boy and God is watching over him. I think its wonderful that your mother lives 1 hour away from Duke. Definintly not a coincidence.
Your a strong mother and that is just what Isaac needs in his life. Look at how far he has come already. Even in a moment like this you find the positive and that is the only way you are going to get through this. He is still the same little boy he was last week...just have more information to take in. At least now you know to be more careful and make sure he doesn't catch any of those nasty germs.
You know I love you all and thinking of you all the time. If there is ANYTHING I can do for you guys just let me know.
Love,
Vanessa
Kathy & Joe, you're the perfect parents for this special little child that we all love so much. We feel Gods love for Isaac & for the both of you when we pray! (just wanted you to know) There is lots of good yet to come for your family.
Let us know when you'll be at Duke. We'll arrange to come spend some time with Isaac in the Hospital there and help in any way we can.
The pictures of the boys are so fun to see - thanks for getting them all in(even reluctant Chris)
We love you all!
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