Hi,
Quick update. In some ways, not much has changed since my last post. With each lab draw and results, I keep thinking, nows the time to update Caringbridge but each result literally brings us different emotions.
To update based on my last post, we did the nupogen injections, they worked overwhelmingly... and yet the WBC have dropped off quickly over the past two weeks. Today, they were at 2.1. Normal starts at 5. Another way they measure it is through absolute neutrophils. Normal: 2000. Ryan's: 400. Better than my last post where they were 0!!!!
As for the RBC, they ran a Coombs test today to see if the results are better than the last test. If better, I believe we'll stay the course for now. There was a call made to the transplant surgeon. I'm assuming I would have heard if he was ready to pull the trigger to make a change on immunosupressants.
So, we're not sure we're much further than the last couple of weeks. I have to say that autoimmune disorders and hemotology become even more foreign to me as we move through this.
Again, thanks to everyone for their care packages, meals and cards. We're hanging in there... as long as my son does not eat us out of house and home! When I wrap this up, I'm going to calculate the calories he's had the last 2 days. Let's just say that between yesterday and today, there were 8 ice cream cones and 4 slices of bread with peanut butter (and that's not everything!) The steriod has been a blessing, hopefully, once we wean it, he will be in a place where he recognizes hunger and that eating is routine. Erin and I always said we'd give him whatever he wants when he finds something he likes, little did we know it would be so much ice cream! See photos!
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