5.11.21 Hematology

It isn’t often anymore that we meet with a new specialty. Aside from a recent appointment with Palliative Care, we haven’t added a new specialty for a few years. I actually enjoy learning the new terms and parameters, being educated on a new part of our complex bodies. I don’t enjoy adding a new specialty when it means new problems, a new diagnoses for Aimee though. It is scary to find a new issue, a new battle. 

We met with hematology for the first time today. The Neurologist has been tracking Aimee’s bloodwork and was concerned about her low white blood cells, specifically her absolute neutrophil count (ANC). The low end of the normal range is 1500. In January Aimee’s ANC was 592 and yesterday’s blood draw showed that it has now dropped to 448. In August of 2020 it was normal at 3,000. The specialist we met with today explained to me that Aimee is now considered at a high risk for infection with a particular concern for blood infections. Due to her low levels, we need to adjust our protocol for any symptoms of infection. Rather than a wait and see response, we need to bring her into the ER for blood cultures promptly with any fever and most likely start immediately on IV antibiotics. Unfortunately, Aimee doesn’t regulate temperature normally and does not usually have a typical fever response to infection. Her temperature may even drop down instead of go up or she may simply become very lethargic. This makes it trickier to make a set of protocols for her. The plan is that with any symptoms we find concerning, we will talk with the hematologist on call to decide if we need to immediately bring her into the hospital. This feels like a big shift and is kind of disappointing. We have been doing so well lately at avoiding the hospital with all of our wonderful respiratory equipment and her J tube feeding. 

Aside from this change in protocol, we will be adding in regular blood draws so that hematology can gather more data and track her progress. There is a possibility that she had some type of viral infection several months ago and is very slow to recover, though we haven’t seen symptoms of that. If it is so, this may resolve on its own. If not, if we continue to see her numbers drop down to 200, she will have to have a sedated bone marrow aspiration done to try to determine the cause. 

We do plan to proceed with the spine surgery. The hematologist did not feel that we needed to cancel it, though they will check her blood counts again the week before surgery. I have not heard anything from the RPM clinic regarding an ostomy surgery. I am assuming this means we will not be able to fit that in beforehand, but hopefully tomorrow I will hear officially.