Thursday, December 11, 2014

Mind Blowing Scariness..

Yesterday morning was definitely one for the books. We have been through a lot as a family, and Jason and I have watched Parker go through the ringer medically more than once, but yesterday nearly took the cake. At 4:30 a.m. I woke up to Parker screaming "Momma!" over and over again. I shot up from this excuse of a couch/bed that they give parents and ran to his side. He kept asking for his water, which I though was amazing. I remember thinking, "Finally, he is turning for the better if he wants to drink his water!" I was wrong. When I got to him with his sippy cup and held it up for him to drink, he was on fire. Literally. I called for the nurse, and when she took his temperature it was 103.6 axillary. Which means that technically his core temp was 104.6. She ran out of the room and minutes later came back with his dose of Tylenol. She was quickly followed by the floor doctor who seemed pretty concerned. In his opinion the fever was bad enough that he wanted to consult with the renal team about a rescue dose of Motrin. We were told that Parker is never to have Motrin because it can damage the kidneys, so the fact that they were considering giving it to him despite the consequences was alarming.

Typically his team of doctors doesn't come in to round with us until 10 or 11 o'clock on any given day, so when his entire team walked in at 6:30, I almost lost it. At this point they wanted to become aggressive and test for anything and everything under the sun just to be sure that he didn't have something else brewing on top of the Adenovirus and Coronavirus. By 8 o'clock things weren't looking good. The doctor was very concerned about his kidney function. Usually Parker's creatinine baseline is 0.3-0.5, but when we got here it was 1.3. Over a 24 hour period and pumping him with fluid, it came down to 1.0, which kept us optimistic that he was simply dehydrated. Yesterday morning, however, it went from 1.0 to 1.2. A climb in kidney function while already on IV fluids is not a good thing. On top of all of this his diarrhea was still out of control, he was lethargic, and he managed to yank his own IV out. Unlike the amazing facilities at CHOP-that we desperately miss- CHNOLA doesn't have an IV team. So we had to wait hours for the anesthesiology team to become available to put in another IV. In the meantime the doctors all discussed the probable causes of fever and ran a slew of tests including stool cultures, strep cultures, and blood cultures. They also called in the Infectious Disease doctors to consult on a possible diagnosis. The doctors were extremely concerned that the simple Adenovirus had turned into Systemic Adenovirus, which is when the virus implants itself into the blood stream.  We were told that our best case scenarios was that the antibiotics had caused the c-diff infection, which would explain the diarrhea, but that our worst case scenario at this point would be Systemic Adenovirus.

In order for you to completely understand the severity of the situation, I may need to give you a little medical lesson. You see, the anti-rejection medicines that Parker takes daily suppresses his immune system just enough so that his body doesn't attack his new kidney, but that he still has enough of an immune system to hopefully fight off any viruses or infections. With his ANC nearly bottomed out at 0.5, his body didn't have enough of an immune system to fight off whatever was brewing, and the anti-rejection medicines were only going to keep suppressing his immune system. But if we lower the anti-rejection medicines to allow his body to fight off the virus, his body could potentially attack his kidney. Do you to see the dilemma?

Needless to say, Parker had everyone, including his usually calm, cool, and collective doctors very concerned.

I am happy to report that he is now 36 hours fever free, and the diarrhea has started to improve. His creatinine came down from 1.2 to 0.8 with increased fluids and less "heiney output", so his kidney function is improving. We did have to lower his anti-rejection medicine to allow his body to fight off the virus, but with the improved creatinine levels we are hopeful that his kidney isn't at risk. The cultures for c-diff and strep came back negative, but we are still waiting on the results of all of the blood tests taken this morning, including the one that tests for Systemic Adenovirus. The doctors are optimistic, though, that since he is starting to turn for the better that he simply just had the virus. They also believe that the virus caused him to have a bout of colitis, which is causing the abdominal discomfort and diarrhea. He's slowly started to drink and take a few bites of snacks here and there, but don't worry his attitude is still securely in place. Did you expect anything different?

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