I wanted to know what Owen's antibody levels were so I have a realistic idea of what we're dealing with and how difficult a donor match is actually going to be.
Owen has antibodies to several COMMON antigens and a large amount of these antibodies are cirulating. Once you have these antibodies, you will probably always be able to make more. Ideally, they would like to avoid the antigens altogether and find a donor with NONE of them. This is difficult because Owen has antibodies to many and they are COMMON. This significantly decreases his donor pool ! The best they can do is make the amount smaller so the chance of immediately rejecting a heart is decreased.
The IVIG and Rituximab treatments are supposed to make the amount of antibodies decrease. In bigger people, they can use plasmaphereisis, a procedure like dialysis that can only be done in small children if they are on ECMO... not a practical option.
After the 44 days that Owen has to complete of IVIG and Rituximab, it will probably need to be repeated if there was little effect. If there was good effect (less amount or number of antibodies) then we will probably keep it up to keep the antibodies from coming back and see how he is doing. It appears that we will continue the treatments indefinetly?!
Dr. Halnon said "Some kids get over some hump and cook along for awhile even if they don’t look good for a Fontan they may last awhile with the glenn shunt. If they start having trouble later we revisit the whole thing again and when they are large enough add plasmapheresis into the mix. Certainly all this is more art than science and not very pretty art at that. Just flowing with it is the best thing."
We will continue to "cook along" and go with the flow! Continue to pray for this crazy little man and his broken little heart.
16 comments:
He is always so happy! What a kid :) I sure hope these treatments will be effecive! Owen is always in my prayers for his new heart...also wanted to share that Seattle Children's had another transplant this morning! Check out Karlee on our blog...amazing, this makes 5 since the first of the year :) Not that I'm trying to pursade you to come here for transplant region option #2 or anything!!! Take care!
Love,
Katie
i am so happy that you got some answers. mr owen is always in my thoughts and prayers. i am keeping god busy these days. your son is just adorable. i hope this HUMP is going to over for ya'll before you know it. in christ..
bonny in TX
I just wanted to stop by and let you know I'm praying for you guys and owen's little heart. I have added the button, unfortunatly it doesn't bounce people to your page. Do you know how to fix this?
I'd love to be able to send people to visit Owen's story and get them praying for him.
Wow, you are amazing! Quick reply and all! I fixed it, so I'll be sending people your way.
I am in awe of your strength and ability to "flow" with it. It must be unimaginably difficult, and yet you do it. Owen is certainly a gift. (And a cutie-pie!)
Thanks again!
K
You truly are Owen's Angel, just as he is yours. No mother should ever have to go through what you are going through, and yet you do it with such grace and love.
Please know God is listening to the thousands of prayers for Owie-O.
You are in our prayers too!!!!
Have a peaceful day.
Oh Andrea,
I just don't know how you do it all. It really is amazing to me and you have such a positive attitude the entire time. You inspire me to be positive even when I feel very much negative. I continue to think of and pray for Owen and your family. He really is such a cutie pie, but I have to say, he looks like a handful! I hope this will work and that his new miracle heart will come very soon.
Keisa
It is good to hear the clarification... what a great cardiologist to have such a fast response! We think about little Owen often and pray for you guys and the search for a heart. Heart Hugs!
Alli
He is such an incredibly happy little boy!!! You all are doing such a great job with him! Keeping Owen in my prayers !
I want to tickle that silly little boy so bad looking at that picture!
What a rascal!
I'm glad you are working with a doctor who takes the time to answer all of your questions! It makes such a huge difference!
Oh what a cutie! I'm so glad you got more information about the antibodies.
If he ends up going down that route later, the plasmapheresis might really help. I really don't think they go on ECMO for it. We actually do it on our floor (which is not an ICU) I've seen them done on 2 patients in the last 2 months since I've been working on the unit. The way its done here, a doctor/ nurse specialist team brings the equipment and it takes several hours and needs to be done for 3 days in a row.
I was actually really curious about it one day and so I asked the doc who was administering it and he explained it and let me watch how the equipment works. Its pretty fascinating - there's a centrifuge that seperates the antibodies out. The kids I saw having it done were having rejection symptoms and did really well with it.
Big hugs for all of you guys. Owen is such a cutie. I'll be thinking about him
Oh, don't you love the "just go with the flow" non-plan plan? I just look at Owen's picture and can't help but think of how WELL he is handling the go-with-the-flow! He looks fantastic and as cute and sweet as ever. God works the best when we're not in control, right? We are praying for you and for a new, PERFECTLY-matched heart for Owen.
Love, Jesse
I know I haven't left a lot of messages because I'm usually holding T, but I wanted to let you know you are in my prayers and I think you are the best heart mom I know!
HEART HUGS
We will be thinking of your family on this upcoming Valentines Day and pray for owen.
Thanks for leaving a message on my blog. You son looks so happy. These little guys go through so much and still have a smile on their face. It's amazing! I'll be checking out your blog to see how Owen's doing and praying for him.
Andrea
Owen's huge smile always brings a big smile to me!! I just wanted to write and let you know that your little man is often in my heart and prayers. I pray his antibody levels go down.
I have a new appreciation for the pain you are going through now that Gracie is being listed as a heart transplant. I am amazed that you are able to deal with treating his antibodies and the fact that you will have to go out of state for the transplant. What a huge challenge. The Lord must have something special in store for Owen because you guys are being tested to the limit!! Our thoughts are with you even more now that Owen and Gracie are transplant buddies!! Hang in there, you are doing awesome!
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