Making Progress!

We have good news! The results from Aaron's DHR test came in this afternoon - and his DHR is totally normal!! The DHR test is the standard for diagnosing CGD - it measures oxidative bursts and an abnormal result indicates the effects of CGD. His results before the transplant were abnormal, as you'd expect in someone with CGD, and now they are normal! That's a solid indicator that he is growing Jacob's cells and not his own. Which means that all signs point towards the fact that the transplant was successful!

They can't say that definitively until the engraftment study results come back. They will send out that study on Thursday (Day +28) and it takes a week to come back, but in the meantime, we're celebrating the good news. 

Overall, Aaron is still making steady progress! It's not exactly a linear progression, but we're learning that most healing isn't linear.

Late last week, we were seeing steady gains in Aaron's ANC, which is exactly what we were hoping for. Over the weekend his counts were a little more up and down, but we were encouraged that is completely normal. We're just looking for overall steady progress upwards. So far, that has been the case - the numbers jump around, but as of today, his ANC was 1,050!! It's only been 10 days since we started to see the ANC start to rebound. How amazing are our bodies?!

His hemoglobin and platelets are still hanging out around the threshold for transfusion, which is both frustrating and encouraging. Encouraging because they aren't plummeting. It appears that his body is trying its best to make new cells as fast as it can and holding onto the transfused cells well. But it's also frustrating because the hovering is both worrisome for going home and can be energy depleting for Aaron while he tries to recover. He did get a platelet transfusion today so we're hoping he can hold onto those platelets!

For the most part though, he is feeling much better than he was last week. The nausea is subsiding and his appetite are increasing. He's tolerating his feeding tube and the feeds well, which is helping to have more energy overall. He's had plenty of energy for Lego again! His biggest complaint right now is some intense itching that he gets after his daily shower. No one can quite figure it out yet - it's a really uncomfortable 20 minutes but then it's gone. 

He's also making excellent progress on weaning from his IV meds - which is another stipulation to be able to go home. Slowly but surely all his IV meds are getting turned over to oral options, which is huge. Once they can wean him from the IV nutrition, he'll be mostly free and clear from the regular IV infusions, with the exception of needed transfusions. The past few days he has had several hours a day totally unhooked from any tubes or wires. It's glorious!

From what we understand, as long as nothing significant changes, we're still looking at discharge for the end of this week or early next week! They are watching his platelets this week - seeing how long he can hold the platelets he was given today and how long they will last him - to determine whether he needs to stay closer to the hospital or he can go home. He'll be coming back to CHOP weekly for the next few months for regular clinic appointments, but if he needs to be seen more often than weekly for awhile, it makes more sense to stay closer. If he's not quite stable enough, it's also important that we can get here quickly, so closer is better in that sense too. 

Thank you for check in on us, texting for updates, sending encouraging thoughts, and praying so faithfully for us. It means more than we can fully express! 

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