Really, I will be saying TGIM on Monday when Lucy can get her new line put in and we can go home. Today was another day of waiting for bacteria to grow, or rather not grow…so far no growth. Medically speaking today was an uneventful day, Lucy’s red mans was better than yesterday, but not gone. We are watching her carefully for any increased signs of reaction. Her blood pressures are on the rise and we are not really sure why, we are keeping a close eye on those too. She is on a pretty hefty dose of clonidine so her pressures are concerning, but for the moment we are monitoring them closely.
Today I had a meeting with the new palliative care doctor that DuPont recently hired. She came from CHOP and trained with the very established palliative care team there. She knew about Lucy and our family from our consult that we had with the palliative care team at CHOP way back in December, and was very excited to meet us. Due to the multiple hospitals stays that we had over the winter and spring I never really followed through with the CHOP palliative care team. I was very excited to learn that DuPont has started their palliative care program. It was difficult to discuss all that we needed to discuss without Drew here and with Lucy demanding this and that. We agreed that we should arrange to meet soon without distractions and with my husband next to me.
Drew and the kids came to the hospital tonight for our usual Friday night pizza night. We told them that we were not going to the beach tomorrow…but rather we will be going next week! Drew and I are rearranging everything to make this happen.
Tomorrow we have a few fun things planned here at the hospital with the kids. We are trying to make the best of a less than ideal situation.