| 9:00 PM |
Immune Dysregulation |
"Immune dysregulation" is the latest term to describe Sam's condition. If it's unclear, you're not alone. The positive news is that Sam's mytogen responsiveness (ability of cells to fight off infection) was markedly higher than it would be if he had a SCID. So, we're out of the woods on a "bubble-boy syndrome".
Which leaves us...still guessing. Immunology told us today that we may never have a name for his affliction. Not exactly what a parent wants to hear. It's frustrating to hear conflicting messages from our doctors (even if they only differ slightly). We are well past them needing to sugar coat a diagnosis to keep us happy. We've been up and down enough already.
For now, we know his immune system is performing only moderately well with a steady steroid dose to fend off the eosiniphils. He needs to wrap up a couple more days of IV Bactrim, then we can continue the bulk of his treatment at home. We're preparing for some significant life changes to accommodate at least the next few months until we can see the progress of his weight gain, steroid treatment and milk allergy. We've prepped the kids for the change; we're getting ready to keep him mostly isolated without him feeling isolated.
In the meantime, we are trying to focus on the fact that he's happy, he's here, and we're a family.
Which leaves us...still guessing. Immunology told us today that we may never have a name for his affliction. Not exactly what a parent wants to hear. It's frustrating to hear conflicting messages from our doctors (even if they only differ slightly). We are well past them needing to sugar coat a diagnosis to keep us happy. We've been up and down enough already.
For now, we know his immune system is performing only moderately well with a steady steroid dose to fend off the eosiniphils. He needs to wrap up a couple more days of IV Bactrim, then we can continue the bulk of his treatment at home. We're preparing for some significant life changes to accommodate at least the next few months until we can see the progress of his weight gain, steroid treatment and milk allergy. We've prepped the kids for the change; we're getting ready to keep him mostly isolated without him feeling isolated.
In the meantime, we are trying to focus on the fact that he's happy, he's here, and we're a family.
2 comments:
Hi Stevie, thank you for keeping this updated, I know it must be hard with all that is going on. For those of us who are far away and cannot be there to help it is a comfort. I love you all. Please give all the kids a hug and kiss and tell them I love them.
Extra Prayers for your family at this time. I had no idea this was all going on until just recently. I hope that they can find out what to do for baby Sam. you are both amazing parents, and litte Sam is in your family for a reason. He has the best shot because of the type of people you are. again, prayers for your family.
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