Saturday, November 22, 2014

Pathology Results: I Have No Idea What's Going On

It occurred to me last night that we're way behind on our updates--we're so sorry! We've been worried about our little monster and between that and sleep deprivation, everything has started to blur together.

While we were in the hospital, we got the pathology results and everything viral, bacterial, and fungal cam back negative which was a huge relief, especially since that includes PTLD (post transplant lymphoproliferation disorder). However, because all the tests were negative, we really only know what it isn't. The best assessment pathology could come back with was to call the spot in his mouth atypical histiocytic granuloma which basically sent all of our doctors off to consult Dr. Google since they have no idea what that is. Apparently, it's basically a benign canker sore with inflamed cells . . . and they still have no idea what caused it.

Apparently this is a legitimate medical assessment.

Currently, the spot looks better than it did pre-biopsy but now it sort of looks like it's an indent in his mouth. It reminds me of when I took a big fall while rock climbing several years ago and I got a huge rope burn on my leg that was basically a divot. I could share a picture of Max's mouth spot but let's be real--even I don't want to look at it and I have multiple pictures of it on my phone for the various doctors to avoid them having to look at it in person since the only way to see it is to make Max cry (not on purpose but he hates tongue depressors almost as much as he hates Q-tips). You can tell no one has any idea what's going on when the head of cardio tells our transplant coordinator, "Well, I guess you're going to be the expert on atypical histiocytic granuloma in transplant kids," and she retorts with, "Hey! YOU are supposed to be the expert here!"

For now, we're just monitoring the spot to see what happens. There's limited information about these spots to begin with and no information about them in regards to transplant recipients because Max's system apparently has Brooks Wheelan's Disease.

On Tuesday, Max was supposed to get his Synagis shot but we had to cancel at the last minute because he had a fever for the first time in weeks (because every day he's supposed to get shots, he pops a fever). We took him to our Flagstaff pediatrician yesterday and she checked him out. The viral respiratory test we did at clinic on Wednesday was negative but our pediatrician said he still looks viral, like he has cold, due to his very congested nose and the fever. But those symptoms could also be a fever from teething and congestion from the air up here in Flagstaff. Of course, we can't brush off the symptoms  so we have to closely watch Max to make sure nothing spreads to his throat, lungs, or ears. He's still running a fever today but Tylenol seems to help make him comfortable. As our cardiologist says, with transplant kids you always have to prepare to see zebras every time you hear hoofbeats which certainly doesn't do anything to help our stress levels.

Stupid zebras.
For the time being, we're just watching his symptoms and hoping whatever is going on just passes so he doesn't have to end up back in the hospital. On the positive side of things, we got Max's lab results back from his blood draw this week and his hemoglobin and hematocrit results are improving which means the iron supplements we've been giving him are improving his anemia--yay! Hopefully some serious weight gain won't be far behind.

Max's goal weight.

On a lighter, much happier note, we are feeling very loved at the moment. In addition to the outpouring of love and support we've received since announcing Max's HLHS when I was pregnant and going through his subsequent transplant, we've received some amazing surprises on our doorstep: care packages! To our local friends who have been so kind to us, we want to thank you again. You guys are so wonderful and I don't know what we did to deserve such awesome friends but we love you so much and we're so grateful to have you in our lives.


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