Most of you know by now that if I'm writing a new blog post, it's usually not a good sign. When things are simple, it's easy to quickly post to FB and keep people updated. But when things get complicated I need a little more room to explain.
Since Parker's last stomach virus at this time last year, things have been....off. Some of his blood work never really bounced back, including his platelets, hemoglobin, and hematocrit. Just recently we started having more issues. No matter how much he ate, he never gained weight. He had unexplained diarrhea, which just recently led to malabsorption. In the last month or so, labs got worse, so we started running more and more tests. We've done umpteen stomach ultrasounds, over $2,000 worth of stool studies, and countless labs with no answers. Just last week his team decided to re-test him for EBV, BK, and CMV again. These are tests they do at least once a year because of how serious they can be for transplant patients and they have always been negative before, so I thought.. okay just ruling one more thing out, no worries.
Yeah, not so much.
Yesterday Parker's team called to let us know that his blood work came back and it tested positive for CMV virus or Cytomegalovirus. We were quite shocked and scared to hear this. Prior to transplant one of the requirements was that Patty- our hero- be tested for CMV and the doctors were mind blown to find that she was CMV negative. This was a HUGE deal because had she been CMV+ Parker would have been at a much higher risk of contracting the virus, as her kidney could have transmitted it to him. That is actually the most common way that transplant patients become infected with this virus. For kids like Parker, who have a CMV- kidney, it's actually quite rare for them to contract this virus over 180 days after transplant, so this means that at some point in time recently he has likely come in contact with someone who actively carried the virus.
While all of this probably just sounds minor up until this point, this is where I'll get VERY real with you. Most times I sugar coat things as to not panic everyone, but I think it's time some people get a true glimpse at our life. Maybe then it will sink in when I say that a simple virus for you is not the same for my kid. This is why we stay in our bubble, and this is why I preach about staying away when you are sick, and having respect for others who aren't as fortunate as you. We are EXTREMELY lucky that we caught this when we did. As of now, the levels in his blood are relatively low (435) even though they should be undetectable. BUT, the problem is that this virus has also caused his WBC and ANC levels to be so extremely low that he doesn't really have an immune system to speak of right now. At this point, the doctors are very concerned with whether or not he will be able to kick this virus on his own, even with the help of medicine. They are actually talking about discontinuing one of his daily anti-rejection medicines in an effort to help his immune system build up, and if you know anything about organ transplantation, you know that this is something they never do. It's a HUGE deal and BIG risk to his kidney. Without those medicines, his kidney is more susceptible to rejection. REJECTION!
The reason his team is even considering being this aggressive is because this virus is extremely dangerous to post-transplant patients. For people with compromised immunity, especially due to organ transplantation, a severe case of CMV infection can be fatal. Like I said earlier in this post, we are fortunate that his levels are currently low, however, if his body can't fight this off and those levels continue to increase, things could get much worse in time. The concern in their voices when they called to let us know about this, has us extremely worried right now.
We spent most of the day yesterday on the phone trying to track down a very strong, specialty anti-viral medication, which he will have to take for a minimum of 30 days and until the levels in his blood are undetectable again. Not a single pharmacy in Houma had it, and only one pharmacy in New Orleans could get it for today. So this morning we drove out to NOLA to pick this up and he got his very first dose tonight. Hopefully we don't experience many of the side effects, because that list isn't too pretty. We go to clinic on Tuesday to get more labs, see our transplant team, and discuss the plan of action from here on out. We are keeping our fingers crossed that we are able to come home that night, and that maybe his levels will have magically decreased on their own. Yes, I know that's just wishful thinking. So in the meantime, if you could say extra prayers for Parker, and maybe Dad and I's sanity too that would be much appreciated! We will keep everyone updated as we find out more.
