Even though we have a number of things to catch you all up on in the world of Max, let's start with the most pressing information.
As many of you know, we took Max to our new pediatrician in Flagstaff a couple weeks ago because he had been having a low-grade fever and a couple other minor symptoms that we figured were worth checking out. After our first appointment, everything looked good and it seemed as if Max was simply teething again (we'll get to that later). After another few days of lingering symptoms, we went in for a second visit and a few more followup tests. During this visit, Emily (the Wonder Mom) noticed that Max had developed a weird white spot in the back of his throat. If it were not for Emily spotting this, who knows how long it would have gone unnoticed. Our pediatrician wasn't sure what this spot was, but thought it may be a case of Thrush and we started treating as such. We discussed this with our team and decided this was the best initial course of action and we would follow up in a few days since we were going to be down in Phoenix for an appointment with the hematologist for Max's increasing anemia.
A few days later, we met with said hematologist and started Max on a triple dose of iron supplements to combat his severe anemia-the severity was a surprise to us because we thought his iron deficiency was subtle, not an actual problem that required immediate intervention. During that appointment, the hematologist also took a look at Max's throat and said that this mystery it was definitely NOT thrush, but he wasn't sure what was going on and wanted us to see an ear, nose, and throat specialist as soon as possible. The spot had grown a bit from the previous week and slightly changed its coloring, which is never something you want to see. We met with the transplant team and did a number of initial swabs and tests to attempt to diagnose the new development. Everyone agreed that we needed to see an additional specialist and we made made plans to do so.
Our initial appointment with the ENT was short wherein he decided that we needed to biopsy this lesion because he was not sure what it was by looking at it (which has been the trend this entire week. This lesion/ulcer/spot/growth looks like nothing specific, but it also could be a sign of various things). The procedure itself went well and Max did well, like usual. The ENT sent the specimen to pathology and Max as admitted to the CVICU once again for monitoring and to help combat his growth stagnation, which is another issue that has been ongoing that may or may not be related to everything else that is going on. We thought we were going to be released from the hospital yesterday, but since no one knows exactly what is going on as of yet, Max's lead physician wanted to keep him here for additional monitoring and to have him here in case pathology discovers something.
The first round of testing was inconclusive and all of the surface swabs came back negative for any type of virus. The swaps showed a bit of bacterial growth, but this is to be expected with any mouth swab. We met with an infectious disease specialist, but he also could only tell us what it wasn't, not what it was. He doesn't think it is a virus, but he said it could easily be some type of fungus or mold infection, now this is rare, but possible. We won't know more until the second round of pathological testing comes back, which will not be until Monday at the earliest (since pathology doesn't work on the weekend, because we all know that medical issues take breaks over the weekend just like everyone else). A number of the stage two tests take a few days because they require cultures and petri growth, so there is nothing we can do to speed up those in-depth studies.
Without further testing, there is no definitive way to say what Max is dealing with. He has no other "sick" symptoms (other than no weight gain), which can be taken as a good sign. Plus he has been his usual happy, hungry self. This lesion could easily be a mouth wound gone array, or it could be a condition known as PTLD (Posttransplant lymphoproliferative disease). The latter is a precursor to lymphoma and is a condition that is the result of rampant production of B-cells as the direct result of a suppressed immune system. Lesions similar to the one Max is dealing with is a potential sign of PTLD. Now we obviously really hope it isn't PTLD and don't think it is since Max has no other related symptoms, but it is always a possibility with any transplant patient. PTLD is generally treatable, but that is a road we do not want to have to go down. Max has been through enough in his 9 months of life, so we hope this is something easily treatable or altogether benign.
Until the tests come back, we are stuck in the hospital, which is a bit frustrating, especially because we all know how well weekends go int he CVICU with the skeleton crew. We have had a number of issues already, especially with getting medications on time and a few other things. However, Max is a trooper like always and seems to be enjoying all the cuddle time. We will try and distract ourselves with football tomorrow and hope for good news on Monday. We can't wait to get back home, especially since we only brought down a a few things for what we thought was going to be an overnight stay.
We will update on Monday, but until then, we will be chilling in the CVICU for now.