This was my yesterday. I had a lot of schooling info from our nurse Claire. We get Haven's lab reports every day but all I know is I'm looking at numbers that are consistently going down but I don't know what I'm really looking at!
Claire sat with me a bit and went over each item and what the nurses mostly look at when watching her counts go down. We have a huge 3 inch binder with all of our treatment plans for Haven and all her medications and risks and what we are to do. It's huge - I've only gotten through part of it.
So I studied 4 days of blood work and labs. I had discussions with doctors that the CO2 level they are checking is different than the CO2 level Pulmonary checks on Haven. Dr. Paz-Priel said I was correct and that the veinous CO2 is not the same as an arterial CO2 but at this point none of the Oncologist believe Haven is in a stage to do another ABG. Which I agree but with the ROHHAD and what I know I will not be paying much attention to the veinous CO2.
So I was under the impression that her counts would go down immediately and was super happy that she hadn't thrown up or anything yet. Just diarhea and headaches. Which I was reminded by our doctors that they told me it would take 7 - 10 days before all the cells in her body would be completely dead. So.....I forgot a piece during the multiple hours of discussing all of this and I'm tired. :)
I have been informed that as of day 7 everything we have been dealing with now will change and Haven will become sicker and more tired and need even more help from us to get her through it.
But I learned a lot today and am able to look at her counts and know what I'm looking at and for.