Nearing the end of our first relapse
Since I first posted about Christopher's first relapse, his numbers have continued to improve, his spirits have been tremendous and finally an appetite! We were moved out of the ICU this afternoon onto the medical floor and are keeping our fingers crossed that all goes as planned. Chris will be an "add-on" for surgery on Monday to have his PD catheter removed and hopefully will be sent home a few days after that. He came in determined to celebrate his birthday with his favorite nurses and it looks like he just might get his wish, after all Wednesday will be here before we know it.
Thanks to the insight of all the wonderful parents, especially Linda, and lots of praying, Christopher's doctors will be actively looking into Soliris and additional genetic testing.
...We were discharged Tuesday afternoon, YEAH! He's been doing ok the past couple days, still tired though. He has labwork tomorrow to see how he did with just the one FFP infusion from Monday. If everything checks ok we won't go back until this Monday for the next infusion and will continue to go weekly for now.
He had a nice lunch and dinner with family yesterday for his birthday, thank you for all the birthday wishes. Thank you hugs to everyone!
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Comment by Grace on February 24, 2010 at 8:33pm
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Thinking of you today and hoping Christopher is home and well and having a great 7th birthday!
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Comment by Cheryl Biermann on February 22, 2010 at 6:58pm -
Please email me at cbbulldog@gmail.com so that I can start forwarding information you need for fund-raising. Thanks!
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Comment by Cheryl Biermann on February 22, 2010 at 10:33am
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Well, it's great to hear the good news! Give Christopher a great big birthday hug from all of us! Crystal, it is on my agenda to forward fund-raising do's and don't plus paper work we use, and I hope to get a forum going as well, but getting the info. to parent's directly is our first objective, so keep checking in, I think we'll probably just send one inclusive package all at once, but if things continue to be so hectic, look for paperwork, ect. to trickle in item by item!
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Comment by Svetlana Finley on February 22, 2010 at 9:53am -
Awesome he is getting better and going home soon!!!!
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Comment by Amy Swarbrick on February 20, 2010 at 11:25am -
Hope he gets to go home this next week, that would be so great! And tell him Happy Birthday from us:)
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