Two weeks ago BCH called to let us know that Porter's Absolute Neutrophil Count (ANC) was low. Neutrophils are a type of white blood cell that help us fight infections, especially those caused by bacteria. If your neutrophil count is too low you are considered "neutropenic" and even the normal bacteria we all have in our bodies can cause an infection. The team told us that if Porter were to get a fever we would need to take him to the Emergency Department at UVMMC right away. I was hoping that maybe the low ANC was a false lab result but they explained that one of the medications Porter has been taking since transplant can have the side effect of suppressing bone marrow. Yikes! So they asked us to get repeat labs the next week (last week) to keep close tabs on those neutrophils.
The repeat labs taken last Wednesday (10/11) showed a continued drop in ANC. The team advised us to discontinue the drug valganciclovir (an anti-viral used to prevent cytomegalovirus) and also the cyproheptidine (an antihistimine which we were using to stimulate his appetite). We also began a regimine of G-CSF (granulocyte colony stimulating factor) which is a medicine that stimulates the bone marrow to produce more white blood cells. The bummer is that the type of G-CSF treatment Porter is getting is injected. The double bummer is that we have to do the injecting 😢. The good news is despite Porter's dislike of the injection it really doesn't seem to hurt him all that much. He cries more from anticipation (the boy screams when he sees the alcohol swab) than he does from the shot itself.
We started the daily G-CSF injection on Thursday 10/12. That evening (it seems like this stuff always happens at night) Porter developed a fever. We called our friends at UVMMC and brought him in to the E.D. They were ready for us and took us straight back to a private room where they accessed his port, drew labs including blood cultures, and started IV antibiotics. We are so spoiled with our quick E.D. admissions. If we ever have to be there for something "normal" and have to wait to go through triage, I won't know what I will do with myself! Porter was admitted to the regular pediatric floor (no ICU!) and we had to sit tight for 48 hours to wait for the blood cultures to do their thing. That is standard procedure for people who are neutropenic with fever.
Porter was in isolation during the admission to protect him from other people's germs. Unfortunately, it was probably the smallest room on the floor but the double doors made it quiet and it had a private bathroom. Porter never showed any signs of illness and the only fever was Thursday night at home. That meant that he likely developed the fever in response to the G-CSF injection but we'll never know for sure. His ANC did drop to 0 (as in no neutrophils) at one point but after the requisite 48 hours and once his neutrophil count started trending upward the BCH team was comfortable letting us go home.
 |
| Porter's "we're going home" face. |
Labs taken this morning show that Porter's neutrophil count is now up over 4,000. Well within normal range. Our BCH team wants us to hold off on the G-CSF treatments for now and get labs again Friday. We will also head to Boston this weekend for labs and a transplant clinic appointment on Monday morning.
