So last Wednesday Caleb had an appointment with his infectious disease doctor in Kansas City, so I thought I had better update on what is going on with his health.
We have had to closely monitor Caleb’s CBC labs to check his white blood cells, but most importantly to check his absolute neutrophils to make sure he is not neutropenic. Three weeks ago Caleb’s numbers were 1,200, which while still lower than what the numbers should normally be, were very good numbers for him. Tony and I were happy with those numbers as was his infectious disease doctor. Well, with the appointment on Wednesday we had labs done on Monday (plus we needed labs anyway for his neurology appointment in a couple of weeks). When we got the results back, Caleb’s absolute neutrophils had taken a nosedive drop down to 550. A number of 500 or lower is considered neutropenic and would more than likely have resulted in hospitalization.
We finally have an advocate with Caleb’s infectious disease doctor who feels that there is something going on in the fact that Caleb’s neutrophils are all over the place and want us to see hematology again for more investigation. We are just waiting for them to call and schedule an appointment for us to come back.
I had mentioned to the infectious disease doctor that Caleb’s neurologist has mentioned that he is now concerned about possible lupus as well and has us scheduled with a doctor, but we could not get in until March. She said she’d prefer that we see someone up there if we were willing to drive up to Kansas City again. I said that we’d do whatever we had to do. We received a phone call on Thursday afternoon that we could be seen on Tuesday in the rheumatology department. I am so thankful that we are hopefully going to have some answers for these new questions sooner rather than later.
At our appointment the doctor had no choice but to switch Caleb’s antibiotic to Clindamyacin from Keflex due to his absolute neutrophil count.
So this week we will be getting another lab count on Monday and seeing the rheumatologist office on Tuesday. We could definitely use your prayers for both of these. Caleb does not like to have labs taken, so his anxiety is very high when we have to have labs. Then we will be leaving very early Tuesday morning to drive the three hours to Kansas City to meet the new medical provider. Caleb does not do well with medical providers, so please pray that he is cooperative and that the provider is understanding of Caleb and his anxiety and fear of medical providers. Also pray that we get some answers. I’ll definitely update here as soon as I can after Tony and I have a chance to process everything.