Today you swelled oh so much more, despite our best efforts to limit your intake. Nurse Paige gave you a bath...I feel like I recall you not being uncomfortable during it. You had so many snuggles today. We still didn't know what to tell your siblings, we let them give you hugs and kisses and spend as much time as they wanted because we didn't know how much time you had left. They made you pictures that said, "feel better". They assumed that because we had not taken you to the hospital that meant you couldn't be that sick. Being unable to find a middle ground (again/still), Aba and I continued our adamant differing opinions and desires, until Dr. Wendy made the call to send out a hospice nurse along with our social worker to assess the situation.
That was a really tense situation. They both arrived and I could read their faces completely. I knew they agreed with my assessment. Our social worker for sure didn't get paid enough to offer the amount of support she did for us. She did as good of a job as anyone could trying to talk with aba, but aba just wasn't having it from anyone. He was not giving up. He couldn't understand even now that it wasn't up to us...we had done everything we could, it didn't matter, you were calling the shots from now on. As an olive branch, I asked Nurse Amanda to come and do a set of labs. I was vehemently against the proposed idea to take you to PCH only to have them tell us "there was nothing to do" and then have them admit you to hospice and come back home. Over my dead body was anyone taking you out of the house and into that ER to end up right back where you were. I stated that really loudly...I am sorry for all of the screaming and fighting that happened right next to you. I bet you wanted to sit up and tell us all to shut up.
After the visit, aba was still not able to agree to hospice, so I was told by our social worker that she did put in a note that if I called hospice myself there was approval at this point to admit you. The hospice nurse told Sam that he needed to do something, either take you in himself or get you admitted to hospice. You were swelling just too much...something needed to be done to make you comfortable. You didn't complain, but I am sorry if you were in any pain over our inability to be a parental unit. I can't imagine the amount of swelling you felt was comfortable at all.
In the evening we accessed your port and nurse Amanda did your labs. By nighttime, your swelling was getting even worse. You couldn't clear the fluids from your lungs. At 2am after aba and I cried many many tears, aba called to admit you to hospice himself. I think we both cried ourselves to sleep if we even slept? From that point on I wouldn't leave your side. I whispered to you every night onward that you were such a brave and strong girl and whenever you were ready it was okay to leave. We still hadn't told many people. It would take me 2 more days to be able to post about it on your Facebook page to let everyone whose lives you touched know that your time with us physically was limited.
Love always, Ema