Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

CT Scan

on January 13, 2014

It’s shameful that it’s taken me this long to update Teddy’s blog.

If you follow Teddy on Facebook, you already know that his CT scan came back looking GREAT and he does NOT have PTLD.

YAY!!
Super Yay.

The CT scan day itself was long and tiring (we left the house at something like 4:30 to drop the kids off and then drive out to be there at 8 for an IV (4 tries) before his 1:00 procedure. Upon administration of the sedation, Teddy started having trouble breathing and needed 1.5 liters of O2 to keep his sats up. That had me plenty freaked out, but once they had him moved into the CT room, they figured out that his tongue was in an awkward position and once they moved it, he was able to breathe fine on his own again. Then we stuck around for another 3 hours for hydration. They wanted him to prove he could drink some water before we left, but then – they also wanted us to go home, since they were closed. And he doesn’t always drink water. So we left anyway. And then she told me not to let him sleep on the way home unless I could be in the backseat with him. Um… ok?

Anyway. When I got home, the oncologist had left a message that he had the results but was heading out for the day and if I didn’t have a chance to call him before 5, I could call in the morning. ARGH.

Because they have my cell phone number in his file. And where do they think we are during the 3 hours after we walk out of the building?? Huh??? grr.

So after a long night, I had him paged at 8:01. :) So – no PTLD, that’s super great.

He does have a sinus infection that they saw on the CT scan, but we’re opting to monitor and hope it’s viral and he beats it on his own. He does have lowered immunosuppression still, so that should help.

So, the plan from here is to check labs one more time to be sure the viral levels are stable or decreasing, and then slowly increase his immune suppression back to where we’d like it to be.

His kidney seems to be hanging in there just great. :) The risk of lowering his immunosuppression is his body realizes there’s a giant foreign kidney in there, but so far his body seems to have been so busy fighting the EBV and another virus, CMV, and the sinus infection that it hasn’t gotten around to the kidney on its To Do list, lol.

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2 responses to “CT Scan

  1. heidimarie says:

    I completely understand about not hearing about test results! It drives me nuts when I’m waiting to hear from a doctor and then find out I missed their call! Glad to hear the news, when you finally got it, was good news. About the EBV–is the idea that his body will fight it off eventually and then it will no longer pose a threat? I know that it can be linked with nasopharyngeal cancer later in life, so I am wondering if it’s one of those viruses that hangs around dormant potentially causing problems even after the initial infection. Or does the lymphoma risk mostly go away once his body “beats” the virus?

    • sarahtar says:

      EBV stays dormant in the body forever. Some (many?) peds transplant recipients actually get it from their new organ. In most healthy people, you get it as a child, have no symptoms, and carry it around with you the rest of your life without incident. Like many viruses, though, it can also cause other problems (mono, for one, but EBV is associated with a few other things, too).

      Peds transplant patients are sometimes (often?) dogged by it (as well as two other troublemakers, CMV and BK) for years and years. Any time his viral load starts to rise above certain cut-off levels, we’ll take steps to watch for and combat PTLD.

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