Yesterday morning after being up every two hours (due to our nurse, not Georgia) I woke up to the oncology team coming in our room. they went over their daily numbers then I piped up and asked a question about some chromosomal testing that recently came back. They finally found a chromosomal abnormality that is further confirmation that Georgia has JMML. A piece of her chromosome five broke off and attached to chromosome 13... if this was found throughout her bloodstream that could impact future children that we have. Fortunately they only found this abnormality in her bone marrow which means we are at the same risk as the general population (about 2 per million) and it gives them a marker to track her remission.
After that was discussed I expressed frustration about how I had not been told earlier that I would need to stop breastfeeding. The attending looked at me blankly and said, that's the job of the transplant team. When I asked why it had been discussed for the previous week by several people and no one had bothered to tell me she said, well you have 6-8 weeks to ween her and if you want more information we can arrange for you to have a meeting at the SCCA (outside of the hospital). The new attending (they rotate every couple of weeks) whom I had met just minutes before said, we apologize that it happened this way. I talked about how we discuss how many times I feed her daily, again was met with, we can set up a meeting with you and the SCCA.
After fuming most of the day yesterday, swearing a lot and talking about how much I wanted to get out of here I decided I would take a different approach this morning.
When the team came in today, after numbers were read I said, I don't think I did a very good job at getting my point across yesterday. I understand that Georgia's was a difficult diagnosis, I know the job of this team it to figure out her treatment plan. I understand that my breastfeeding isn't top of mind for you, what frustrates me is that when it was brought to your attention no one was willing to simply walk through the door and tell me. I would never want to do anything to jeopardize her transplant going as smoothly as possible. I also said that being here requires building trust with all of these people who rotate in and out of our room and Georgia's care, some of that has been lost.
Fortunately the old attending was done yesterday and the current attending said she heard me loud and clear yesterday and was sorry that the communication wasn't more clear. I am still mad about this whole situation, but at least I know I have been heard.
Today I met with a lactation specialist to figure out the best way to ween, her suggestion is to pump three times a day.. Oh, sure, no problem (can you hear the sarcasm) I have time to do that! Like everything here, one day at a time.