We visited Dr. Stock yesterday and it was so nice to not have an echo! Dr. Stock agreed that Owen looks great and we're just hoping the cath did him some good. We'll know on March 5th when we go back for his next appt and echo. Owen is on 1/4 liter of oxygen and his sats have been in the mid 80's so I'm dropping him down the puff of air on 1/8 liter and PRAY that he'll be off by next week. It'll be so nice to take an oxygen break for a while. We confirmed the dates of his next IVIG and Rituximab doses and lots of blood draws over the next few weeks.
I emailed our cardiologist at UCLA to find out what Owen's antibody levels are at and what our goals are. Also... what happens after this cycle of treatments.. do we start all over again? We are all cautiously optimistic that time is on our side and Owen is sustaining himself well at home. We're also realistic about the situation and know that anything can change at any time. We just pray for Owen to stay healthy and strong!
Please say a prayer for our heart friends Lindsay and Sofi who are currently in the hospital waiting for their hearts. They both have HLHS and are dealing with the same highly sensitized antibody issues.
Thursday, February 5, 2009
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7 comments:
I'm so happy to hear that everything is going along well! Thinking of Owen and you!
Owen gets stronger everyday from all the prayers and the love he feels from you and kisses and hugs from his sweet big sis. You are an awesome mom!
God is shining his healing light on Owen. Keep the Faith. :)
I love seeing pictures of Owen, especially his cute cute smile. We are definitely keeping him and all of you in our prayers.
Glad that his cath helped things out a bit and hoping he's weaning just fine off the O's. What a cute party, cakes and of course, birthday boy!!! He's so adorable with that smile and those eyes. Love that boy! Keeping Owen in our prayers...
Love,
Katie
Thanks for the post for prayers for Sofi and Lindsay! Waiting to here what the docs say about Owen's levels. Maybe mention the rituxin only once a month and see what they say out there. always nice to compare and see if their studies have shown the same things.
Love to you!
Suzie
Yeah for a good ECHO and hopefully a great next ECHO. We'll keep him in our prayers that he can come off oxygen and sustain his stats. We'll also pray that he can stay strong and healthy until he can receive his new angel heart.
Oh, and about the circumcision thing...we wanted to get it done earlier, but his health problems kept him from getting it, and now we really need to because he keeps getting UTI's and it is the source of infection. No fun for our little guys.
I just came across your blog. My son's name is also Owen :) I added your button to my blog and I'm so glad that everything is going well with him and I hope he continues to get stronger!
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