Saturday, December 13, 2014

Heartbroken...

Do you remember in one of my previous posts, I said that Parker's doctor mentioned that the worst case scenario for us was that the Adenovirus had become systemic, meaning it progressed to his blood stream? Well, this morning the blood cultures came back showing that he did indeed test positive for Systemic Adenovirus. Not only did the blood culture confirm our worst case scenario, but it's also brought to light our worst fear. The virus in his blood is attacking his brand new kidney, so we have to get it under control immediately.. like yesterday. Typically the cell count for Adenovirus in your blood is less than 100, which makes it undetectable. Parker's cell count for Adenovirus came back at 9,000, which means it's pretty aggressive. As if all of this wasn't enough to take in, his throat culture tested positive for Pseudomonas, which is a pretty ugly bacterial infection that isn't typically found in the tonsils. Treatment for the Pseudomonas is simple, antibiotics. We started him on Cipro last night, and he will continue on a seven day regimen of it. Treating the Systemic Adenovirus, however, is a bit more tricky.

The pharmaceutical treatment for Systemic Adenovirus is extremely toxic to the kidney and is only used as a last resort, which means that Parker has to fight this off on his own. The problem, though, is that even after lowering his rejection medicines, his immune system is still practically non-existent. Without a stronger immune system, Parker's body will not be able to fight off the virus, and the virus will continue harming the kidney. Which means that we have to do whatever we can to improve his immune system, and right now our only choice is to completely discontinue one of his anti-rejection medicines, the Prograf. This is the strongest, most reliable anti-rejection medicine that he is on, so by discontinuing it his immune system should improve significantly. But this method also comes with consequences. By discontinuing the Prograf, we are leaving his kidney susceptible to rejection. So either way you look at it right now, his kidney could be in danger.

His doctors, however, are extremely optimistic that he will come out of this situation healthy and with his kidney in tact. He is not the first of their patients to experience this, and they have had great success with the plan we have in place. Their optimism, however strong it may be, does little to stifle  my fear though. I'm usually a very strong, informed, and defensive parent when it comes to Parker's medical treatment. I don't lose it in front of the doctors, hell I don't usually lose it in front of anyone. When the doctor started talking today, though, no amount of concentration or poker face could hold back the tears. I actually stunned him into silence, which is a first. This by far is the most fearful that I have ever been.

Unlike me, Parker is being a trooper through all of this. Today is a much better day for him since he is 24 hours fever free.. pray that I didn't just jinx us again. His diarrhea is much more controlled this morning, and his urine output has increased a good deal. He stayed up most of the morning watching his favorite shows, playing with some of his toys-which is a first since we've been here, and he even ate a bag of Doritos chips without squirting it out a minute later.

According to the doctors we will be here for a good while longer. Their estimate is at least a week, maybe two depending on how long it takes his body to respond. The plan of action is to discontinue his Prograf, start IVIG to build his antibodies, and start TPN to give him nutrition. If you remember, Parker went down to surgery last night to get a central line placed so that we could give him nutrition through a line and bypass his stomach and intestines. This will give his body time to recover and hopefully completely stop the diarrhea.

Right now we need very specific prayers from everyone. We need you to pray that Parker's body becomes strong enough to fight this virus off, and does so very quickly. We also need you to pray that once the rejection medicine is stopped, that his body does not also attack his kidney...









4 comments:

  1. Kristen, I'm reading this and I cannot imagine how terrified and exhausted you must be. I will keep you and Parker in my prayers. Stay strong!

    ReplyDelete
  2. Praying. THE LORD is able to do more then we can even think or imagine

    ReplyDelete
  3. praying for a complete healing for your little man...

    ReplyDelete